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How Has Your Social Life Changed Since Diagnosis?
Yesterday, as many know, it was a holiday in the United States. It was a day for fireworks, cookouts, family and friends, and a great kick off to the summer time. Usually this is something that I look forward to every year. I realized in the beginning of the day that my day wouldn’t look anywhere near the laid back day of those I was surrounded by.
Many people who were at my beach community yesterday had the day off and some even had the whole week off. I thought to myself, “I wish I could have a day off and be carefree and just relax.” The reality of someone living with Pulmonary Hypertension or other chronic illness is that, there is NEVER a day off from our condition. Sure, some days are better than others but there is always work to be done with self care, taking medications, stopping to use oxygen, changing out equipment, listening to our bodies, and putting ourselves first. This takes work, effort, and a good amount of time during my day.
Having to do everything I normally do during a day while surrounded by people who don’t, made me realize that pulmonary hypertension and managing chronic illness has greatly changed my social life from what it once was. I can’t sit out in the sun all day like everyone else. I need to take frequent trips back to my beach house just to do breathing treatments, sit in the house with oxygen, take medications, and I experience symptoms while laying in the heat that the outsider never would know about simply because I “look okay”.
The reality is, my average day looks a lot different than others who I am around. I can no longer participate the way I once did in social events. Now, social events unfortunately revolve around my health and taking care of myself at the same time. Putting my health first always has to be on the forefront of my mind.
Have you experienced times where you notice how much of an impact your condition has on you during social events? In what ways has PH changed your social life? In what ways do you care for yourself and protect your health during social events?
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58 Replies
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I grew up with my diagnosis, so PH shaped my social life from the start. My involvement with disease communities meant that many of my friends had PH or congenital heart defects so they understood my limitations, and had their own as well. Many of my interests grew from what I could do, rather than what I couldn’t: arts and crafts, reading and writing, games and puzzles. As an adult with PH, I found ways to fit socializing into my life, without totally draining my energy. I’d invite friends to my house for dinner and board games. This didn’t require getting all dressed up and leaving my house: I could just sit at my dining room table, order food, and play a game. Let my friends use their energy getting to and from my place – I wouldn’t even bother putting on shoes.
My limitations have changed since transplant, but they still exist. My friends are learning that if they host a “potluck,” they should have pre-packaged food options just for me because of my suppressed immune system (my friends are really great). It’s simpler for me to do activities that don’t revolve around food, so I organize hikes or rock climbing gym dates, getting the exercise my transplanted organs need, and socialization at the same time.
Your friends value your health just like you do. If you give them directions for how to spend time with you in a way that works for you, chances are they’ll do it. I had so many friends come visit me when I was on oxygen around the clock waiting for my transplant – they’d come sit with me, or drive me to a scenic spot to sit with me and play a game or make art. Be specific about what you CAN do instead of saying no to all the things you can’t do.
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Kathleen,
i really appreciate this response thank you for that ! I feel as though I put myself in a lot of situations that I know deep inside I won’t be able to keep up with and try anyways only to get frustrated and feel defeated when my body fires back at me. I do have a lot of times where I do things that I can do and what I do with friends has changed, but they still are “typical” 27 year olds who like to go out still and party and have that type of social life. It’s hard when I feel held back. I try to remind myself of the things I can do, but in the moment all I’m focused on is what everyone else is doing so I have to learn to make my own way of adapting and taking care of myself while being around everyone else in those moments. You’re right though, it’s important to make them aware of the things that I can do. I know they are aware of this too and we do things like going to movies, watching TV shows together, etc. I wish I had some crafty friends ! lol! I think a lot of them need to get some hobbies besides going out every weekend hahaha! This age is tough to manage an illness though for sure! I connect more to people older than me or my friends who have children and just want to relax after a long day !-
You’d be surprised how many people our age are not into “partying.” I also have a fair amount of older friends (28-40 years old). My friends actually started inviting me to more things when they learned I’m up for doing things like going on a hike, cooking dinner, playing board games, etc. instead of going to bars. You might find that you meet more people when you try to do low-key activities. And you can keep the partying friends – I try to schedule one night a month to go “all out” with those friends. (All-out for me means staying up past midnight sober).
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Thanks so much! I think I need to start finding some friends that are into this stuff too! Most of my heart friends and friends who have similar limitations as me are from out of state so it is hard to get together with them! When we do, it is always such a good and less stressful time on my body. Thanks again for all these suggestions of things that I definitely CAN do! PS I finished those books you sent me! They were so good! “A Man Called Ove” had me bawling my eyes out!
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Oh my gosh! Glad you liked them! I just started another book by the author of Ove – I will let you know if it’s good too! So far so good – the narrator’s grandmother is another cranky but lovable character.
Yes, it’s so nice spending time with people who understand without needing the extra explanation. Maybe there are some local groups you could reach out to? One of the great things about having my transplant is that I’ve met so many other lung transplant recipients (there are a lot more than there are PH patients) and I hang out with them as much or more as my “normal” friends (mostly @brad-dell). It would be great if you could find other PH or CHD patients locally. I think people who have endured medical challenges are generally more interesting and empathetic people, but of course I’m biased.
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I echo what Kathleen said! Actually, one of the first things we ever talked about was “A Man Called Ove.”
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And I bawled my eyes out during the movie. I watched it while awaiting my lung transplant and it touched me so deeply!
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Brad, I didn’t know it was a movie!!! I need to see it! Is it on Netflix? I gotta get on that and get back to you after I see it! I’m sure it’s great.
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I agree! Us spoonies are the best of the best! 🙂 😉 good idea to find support groups ! I go to meetings for PH put on by the clinic here in RI, lots of older people though, nobody around my age unfortunately but they are all super nice and I love going and hearing their stories and connecting with them. It is the first week of every month but they take a break for the summer so I’m looking forward to it starting up again!
Keep me posted about the other books by him! I heard they were great too! I love reading books about those with mental illness and addiction. Anything that gets deep like that intrigues me!
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@brittany-foster, again I continue learning here…just had to look up “spoonies” because I didn’t have a clue what you and @beverly-repouille were referring to.
First I landed in the Urban Dictionary for a basic definition but kept going for a link to Christine Miserandino’s Spoon Theory post as well as a video and even tattoos!
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The spoon theory is referred to a lot in the Chronic illness community. Happy you read up on it! Thank you for posting the links too!
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I’ve used a similar but more abstract (managing limited energy reserves) approach without what math ed folk call manipulatives. Visuals and hands on examples make a difference with adults outside the classroom too.
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Hi Vanessa,
I enjoy a visusal too . And it helps when I sometimes have those dreaded brain fogs. It helps me keep track and recall what I’ve done during the day. What specific maniuplatives do you like to use and what helps ?
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i basically have no life, never mind social life!
i cannot plan anything, whether i make it to an appt depends how i feel that day.
i’ve missed birthdays, thanksgiving, Christmas, drs appts, etc.As far as people thinking i look fine, do they not see the oxygen tubing out of my nose 24/7; an IV pump i lug around 24/7. (as of Oct 2017 i’m on a pill instead, Orenitram)
And what do you say every time they ask how are you doing? And when you say not good, they then 1 up you with all their ailments. Do i sound bitter? They just don’t get it. Now, if i said had cancer it’d be a different reaction.
Oh well,
chris
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Speaking for those of us “older” spoonies (I’m 61 – LOL!), we have the same problems. Many of my friends are very active and I can’t keep up with them anymore. Slowly, they’ve left me behind. Thank goodness, I still have a few loyal and loving friends who take the time to call or text me and visit for a bit.
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Hi Beverly,
I know how frustrating and isolating it can feel when it seems as though you just can’t keep up with them anymore. That is how I feel too with many of my friends. I need to limit my time spend with them for just a few nights (if that) out of the month. It is as if their life just goes on while sometimes I have to stay home. That’s just the way it is but it can feel sad to accept that. I am glad you do have those in your life who will take time to visit and to provide you with support. You deserve those friends!
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i have no social life or friends; i’m a pariah, oh, and old too.
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Chris,
Do you have family members that you are close to? I can see an adorable baby in your profile picture ! I’m sure that gives you joy! 🙂
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What social life? I am still on sick leave from my job. I live in the living room, sitting in the chair with computer, watching movies or tv shows, I am on youtube, tumblr, sometimes on facebook, I read shorter texts (my brain is so exhausted, I can´t focus on more).
I have like three friends, one in senior age, working in the theatre, where I used to go very, very often. So we didn´t see each other for very long.
One is from my work, now on maternal leave with two daughters, she helps us to mow the lawn, because I can´t do it anymore. So I see here every two weeks.
And my best friend, we know each other since kindergarten, when we were 3 years old and we went to the same elementary school. She is also on maternal leave with one daughter. She visited me in June.
So I watch youtube videos of Gordon Ramsay, of korean Pop (mainly TVXQ), political things, historical documents, I like Shah Rukh Khan and documents about serial killers (don´t worry, I am not one).
On Fantasy festival last week I finally saw Black panther, The shape of water and Avengers: Infinity war. Otherwise, I am not capable to go to cinema.
Sometimes my mom takes me to restaurant.-
i do have 2 daughters, 28 & 34 and 2 grandsons (6 & 9), but i don’t see them much.
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Chris,
I’m sorry that you seem to be feeling like there aren’t many people for you to talk with and be friends with. Just know that you always have “Ph friends” who are here to support you and listen to you on this forum. I hope you know that you can reach out any time you need someone to talk to or just need to vent. I wish you were able to see your children and grandchildren more often. Do you get to talk to them on the phone? Are you getting together with anyone over the holidays? -
My daughter and grandsons are going away for Christmas; i’ll be alone. When i say that i am a pariah, i really mean it: a social outcast! People avoid me for at least 2 reasons:
1. i’m sick all the time and they don’t know how to deal with me and
2. i’m a committed Catholic and lover of God and again people don’t know or want to deal with me, ie, i won’t engage in gossip, dirty talk, etc. and they don’t want to talk about faith in God or anything religious (this includes churchgoers)So i’m a pariah, much like a leper, alone on this most difficult journey.
i’m convinced it’s my fault that i’m not liked which isolates me even more.
Lord, why do i bother continuing? What’s my purpose?“More of Him, less of me.” (John 3:30)
chris
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Hi Chris,
I know that it is so difficult when you don’t have people to reach out to and talk to. Please know that this community is very supportive and you certainly have friends here! There are some people who really don’t get it and I’m sorry you feel like an outcast. I believe there is a purpose for everyone in this life. I hope that you can find some happiness this holiday and know that if you are feeling alone and need to talk, you can always talk here. I truly care. -
Got to go to see my daughters today and my 2 grandsons, Jude & Elliott. Spirit lifted. Thank you all for your kindness & heartfelt prayers on this joyous Christmas season; please keep me in your prayers.
Today is born Our Savior, Jesus Christ the Lord & King!
chris
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Chris,
I’m so thrilled that you got to see them. My favorite part of Christmas is always looking at it through a child’s eye . It really helps to bring back the magic of the season. How eas it to be around them and hanging out with everyone? With my family,I felt exhausted but it was well worth it and I wouldn’t change it for anything.
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For the past 3 weeks i have spiraled downhill. Since i still work, i spend my weekends on the couch with my feet elevated hoping to reduce the swelling and the rash. I used to go out to dinner at least once a weekend. Of course, i am older than dirt – i just hate to admit that my life as i once knew it..is over.
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Rosemary,
I am so sorry that you have been feeling like you are spiraling downhill. I can relate to this feeling and it is never a pleasant one. It leaves me feeling very anxious and nervous about the state of my health when I feel this way. Has the elevation been helping your swelling and rash at all ? It is hard to look back and see that things are different and very different from what they once were. I allow myself to feel bad about this and then try my best to shift my focus to the here and now and concentrate on things I can do while resting. Do you like to read at all? That is something that I have found that I like to do again! I used to be a reader and then life kind of got in the way of that, now I am reading more and it helps distract myself when I am having rough days.
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I’m very lucky to have a GF who doesn’t care much for social life. This past holiday, we mutually agreed to not waste our time and energy on sitting in torrid 95F heat watching explosions in the sky. I have to say this is a privilege that I have, to have friends with preferences like mine…
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@brittany-foster – Just a note, looks like my response didn’t get lost, it’s still here!
Though, using a tiny smartphone does make “pushing the red button” on accident all that much easier…
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i’d take any friends.
chris
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Hey. Is this topic still relevant?
I don’t know if it’s good or not, but I wasn’t very socially active before the diagnosis. Although now many moments have worsened (migraine forbids me to go to the cinema and even bright supermarkets; deteriorating vision does not let me into the theater). Big luck when I can go to a concert or to a restaurant without consequences. My friends don’t really know about my diagnosis, and when I refuse to entertain, they don’t ask why. They calls me still times five, then forget and go without me.
Sometimes (very rarely) I go to parties, like corporate parties, graduation parties. There I do not drink (and many ask questions: why? Someone even tried to discreetly pour alcohol, lol), but I’m not boring without alcohol. I have a sense of humor and I could talk on many topics. An hour later already drunk people do not seem to me a cool company (and I don’t seem cool for them). So I’m looking for an excuse to leave early.
The diagnosis spoiled my character. I was sometimes capricious as a child, but cheerful and open. Now I often scold myself for rude or abrupt behavior when unfriendly answering questions that directly or indirectly concern my health (“can you go faster?”, “You know that you would do well to play sports?»). With these words, I hurt people and then I feel ashamed. I’m trying to work on myself, but it’s very difficult, you know. It seems to me that disease makes many of us selfish, and we stop noticing other people who also need help. Probably often need to think about others and try to do good deeds (but this is difficult – someone else’s misfortune can make you worry even more, and nervous because it is must not!). But my colleagues, oddly enough, can say about me almost only good – I have an imaginary “white coat”, which I “wear” at work, and try to maintain good working contacts.-
Hi Valerie,
This topic is definitely still relevant and I am so glad that you responded so honestly to it. I can understand what you mean by feeling as though this condition makes us feel selfish in certain ways. Sometimes though, I have to say no to going to parties and even cancel plans last minute no matter how much I was looking forward to something. This has been hard for me to see this as a form of “self care”. The people in your life who are taking the time to ask you about how you’re feeling and care about your health and well being will understand and will never make you feel that you have to apologize. It can get really awkward at parties when others are drinking and it seems like you are the only one that’s not. It’s hard with my social circle because a lot of social activities that people are going to in their 20s involve drinking and going to bars. It’s always hard to find the balance of taking care of yourself and putting your needs first without coming across as being selfish. But the right people in your life will “get it” and understand.-
“It’s always hard to find the balance of taking care without coming across as being selfish” – Brittany, what are the right words! How often you want to help someone at least in the details – to bring the purchase, to wash the floors… Once a colleague brought to work a baby who was learning to walk in the «baby walker». The kid lost his shoe and I helped him put it on. I’m so tired, like I ran a marathon! Are you Babysitting? I don’t know how exhausting that is! These things make you admit that you’re physically helpless. Where here’s some disco – half-minute slow dance and I’m become Winnie the Pooh. As many here write, the journey becomes incredibly difficult. People seem so active around here, and you sit there staring at their lives like you’re in a cinema theater. But even though it is difficult for us to do some things, we are as smart and interesting people as many others. Such forced isolation is frustrating. Thanks to Internet (lol). If we had lived a hundred years ago, we would have communicated much less.
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Valerie,
I know! I’m so thankful for the internet for that reason. It has connected me with so many in the PH community and also other chronic illness communities that I’m a part of. I don’t know what I would do without the support and care of those who “get it”. And yes, I babysit even though it’s extremely exhausting. Sometimes I sit there getting very overwhelmed and think “if this is hard for me to keep up for a few hours, how could I ever keep up with my own children!?” It’s kind of a scary and sad reality to think about when it comes to my future. -
Brittany, you have great willpower! There are always a lot of kids in the place where I work and I know how active and noisy they are. And very true words about the future… I prefer not to think about it. I guess that’s why I think about the holiday presents at the last minute, lol. But, of course, such thoughts about the future spoil the present. I mean, people trying to get to know me makes me think, “don’t spoil your future”. Have you watched the movie or read the book “The Fault in Our Stars”? “I’m a grenade and at some point I’m going to blow up and I would like to minimize the casualties” – this phrase accurately reflects my relationship with people.
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Hi Valerie,
Yes I have seen that movie and I absolutely love that quote, actually I wrote a column about that very saying. Let me go back and find it and I will post the link here. I’m sure you will be able to relate to many of my words in it.
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Greetings,
All of these previous comments on social life are what I was told was just “you have a life changing event”. This life changing event is effecting my social life. Fortunately I still have friends who accept what has happened to me but in truth they don’t understand it. The big problem is long distance travel. My wife and I used to go on some excursion every year but that ended earlier last year when my PAH seemed to get worse. Now with a pump, medication schedule, and all that jazz we have eliminated those things we looked forward to when we retired. It raises some serious issues about a change from a very active life style to becoming much more sedate.
Every day I try to find someway of interfacing with people. I prefer friends and acquaintances but that is not always possible. It is depressing to say the least. Perhaps when my therapy results in improvements I’ll be able to handle air travel and cruises again but than may never be.-
Randolph,
I am sorry to hear that it is getting to the point where it’s effecting your travel and things you once loved doing. It’s easier said than done to focus on “what you can do” because the things that we can’t do really puts a damper on our emotions. It just plain STINKS when any condition robs you of things you enjoy. Are you able to take smaller trips like day trips or overnight stays?I know that longer trips take lots of planning for me and I can no longer be spontaneous when it comes to travel. But with a portable oxygen, an order for more oxygen tanks before leaving, I can usually make the drive for a weekend or day getaway with my boyfriend and friends. I recently did a cruise too but it required SO MUCH planning and accommodations. It was worth it, but vert exhausting and taxing on my body afterwards because of all the walking every day. I hope that you start to see some improvement and that the doctors can get your feeling more stable so you can do more of what you love!! -
@ripple76 the transition to infusion therapy and titration of the medication was challenging and painful for me. I was not myself and felt isolated from the world. It was hard to accept that life went on when mine had just made a sudden detour. I went through this again when I had my transplant. I thought I had to give up so much of myself in favor of a new life prescribed by my doctors.
It may all seem very unmanageable right now, but other patients on IV therapy and I can assure you that it does get easier. You will find stability again. Once you’re over the hump you will rediscover the things you love to do. You will find ways to do them again – perhaps a little differently than before, but the things that matter to you in life will remain. You will grow from the experience.
This part is hard. Keep sharing – we want to hear. xxx
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I agree so much with what Kathleen is saying here. It’s important to reach out to those who “get it” when it all feels like too much. This online forum and the friends that I have made here have given me a lot of strength and encouragement on really hard days.
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Thanks for your feedback Brittany
I very much want to get back to “normal” and supposedly the Remodulin is going to help. However, as I am in the process of increasing rates and soon dosage strengths I am locked down to dealing with this on a daily basis and my wife and I already have experienced travel with PAH before it got worse and she admitted that it was a load on her when I was always concerned about how I was going to manage tours or walks or what ever. Part of that is due to my anxiety disorder but it was mainly due to my anticipation of things not going well that challenged me on long journeys. Once all this levels off perhaps I will be able to travel with the medical necessities. You were right on about planning and accommodations. Even for healthy people cruising is not easy at the start and the end. Like I said I get tired of having to plan my day around this disease.-
Randolph,
I know exactly what you mean about the frustration around planning your day around treatments and this disease. It certainly can take a lot of our time and effort. My boyfriend is the one that gets a lot of panic in our relationship when it comes to travel and being away. He always worries about the “what if” situations, probably because he has seen me in some of these situations and worries about them happening when I’m not close to the hospitals that I go to and when my mom and family aren’t able to be there to help too. It can be a challenge with our relationship and it requires confidence and comfort from both partners when travelling with an illness like this. I hope that you find some improvement with the treatments ! I will stay hopeful and positive for you!
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Thanks Kathleen and Brittany,
I do need that encouragement. Now to get over the hump! -
By the way, I’ve tried to find people who have had success with Remodulin and similar infusion medications for PAH. If you know of any more I’d love to hear of them.
Have a wonderful and hope filled Christmas
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Hi Randolph,
I’d be happy to post a new topic for you about sharing success stories of Remodulin and infusion medications. I can tag you in it so you can see the forum topic when I post it this afternoon! Would you want me to do that? Merry Christmas to you too!-
Can we post questions directly? I’d like to hear from Forum members on Uptravi, especially about reactions and titration process. During week 1, I noticed where it making a difference but since then reactions have been overshadowing those perceptions. I’m just starting week 4 but either holding or with just a half step.
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Hi Vanessa
There is a way for you to post your own topoc. On the top of the screen you will see a tab for forums, column, etc. Click on the forum tab . If it is about medication you can scroll to where it says “tresting PH” as the overall forum for this question. You may see a list of already created topice about treating PH and medications. Scroll until you see “post New topic” it gives you a blank space to write a heading and a space to write your comment. Once you are done just press sumbit or enter and it should show up when you refresh the activity page. If you are having trouble let me know and I can post it for you and tag you so you get the notification. Thank you! -
Thanks, already started the topic, “Uptravi, reactions during titration, side effects” ~ saw the “post New topic” prompt and went for it. I posted in “PH Treatments” but saw a other places it would fit. Good responses too — popping over there now.
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I’m glad you are getting the hang of the forums ! They really are super helpful and people generally respond quickly:) good luck with finding some feedback
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Brittany
That would be very helpful. This discussion group has been part of my support. I wish you a Blessed Christmas.Randy
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Glad to help, Randy!
I posted the new topic in the “Treating PH” forum and tagged you so you can follow it and see the responses ! I know this community will be able to give some feedback and personal experiences. 🙂
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Not to belabor this point but I spent a dozen days in the hospital to improve my condition. When I returned home I was angry that I was not able to go on lower supplemental oxygen. It appeared I might but when I making the attempt I could tell that my ability to carry on as a few months ago my social life was sorely impacted. How many people with PAH can look for improvement? I’m trying.
Thanks
Randy-
Good afternoon, Randy. What did you do while in the hospital? I was never offered that option to improve my condition.
My doctors have always been clear that my PAH is a progressive disease. They explain the treatments as a way to slow the progression, not reverse it. I do know some patients whose conditions have improved with treatment and they have been able to stop intravenous therapies after years on infusion pumps. Those seem to be very exceptional cases, however.
What my doctors strive for is stability. Do you feel that your health is at least stable after this hospital visit?
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Randy,
I’m sorry you were in the hospital for so long. Personally, when I come back home after a few weeks spent inpatient, I feel weaker than when I went into the hospital. The hospital life not only taking a toll on you mentally, but physically too. I’m sure while you were in the hospital your body was fighting really hard for you. Did you doctors mention being able to lower the amount of oxygen that you’re using or were you just hopeful for that outcome after being treated in the hospital? Did they put you on any different treatments than what you were on before while in there? Try your best not to be too hard on yourself when you come home from the hospital. Your body and mind needs to adjust to being home. Thinking of you!
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Hi Valerie,
Thank you for taking the time to read it and I appreciate you sharing your own meaning of it. It’s a powerful quote and one that can be interpreted many ways by those in the chronic illness community. I can understand exactly the feelings you’re talking about. Know that you’re not alone in thinking this way. It’s so hard. You’re right, the balance of not wanting to be an outcast and not wanting to be a burden is tough. I feel like a burden many times, and even find it hard to get extremely close to anyone new because of this. It’s like I have to “limit the casualties” as she says in the movie. -
Brittany,
thank you for your words, everything you say is true (for some reason, started a new dialogue, I didn’t immediately find where to answer, lost my record about “self-destruct”). I remembered the book “Extremely Loud and Incredibly Close”, which said “You cannot protect yourself from sadness without protecting yourself from happiness”. So I guess since we can’t hide from all our sorrows anyway, we can try to find happiness, too?
P.S. I’ve never talked to someone so much about it, it’s so strange… Especially when you meet understanding (there should be a smile). Christmas is coming, you must be celebrating. I’m studying your recent article about the holidays! I wish only good things would happen to you this Christmas! -
Thank you so much Valerie,
Living with different chronic conditions pretty much most of my life has taught me to keep fighting and acknowledge the ups and downs. For awhile I ignored most of the bad until it really started to take a toll on my mental health. That’s why it’s so important for people to understand that it’s okay to be upset and mad or frustrated. All that is NORMAL, especially when dealing with illness. I definitely take time to recognize happiness and I hope you can find that this holiday too and that you have a great start to the new year ! 🙂 So great connecting with you here and being able to talk to others who understand.
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