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When Both People In the Relationship are going through difficulties
It has been difficult to manage the ups and downs that come with any relationship. Chronic illness puts a huge mental and physical stress on me. Of course, when in a relationship with someone , there are going to be times when they are also feeling down, depressed, anxious, and frustrated. I have found it increasingly more difficult to handle my emotions as well as my boyfriends. It is hard sometimes to stop and see things from their perspective but it’s something I’m working on.
I need to stop myself from solely thinking about what I have going on in my life and also take a step back to look at how my boyfriend is holding up. This is difficult, especially when it is hard to communicate uncomfortable emotions like sadness and anxiety. When both partners are going through something at the same time it can feel impossible to provide support and get support from one another.
As a PH patient, how do you make sure you are still acknowledging your partners emotions and not so wrapped up in your own struggles? How can you let them know you are there for them even on your hardest days? What are some things you do that aren’t just about using up your physical energy?
For those who are supporting those with PH and a spouse or loved one of those with PH, do you find it difficult to express your hardships with them, knowing what they are going through medically? Do you ever get overwhelmed in this support position and how do you manage the emotional toll?
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15 Replies
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This is a great topic! I’m sorry you and your boyfriend are both struggling right now. This is a challenging time in both your lives, but it is temporary. Keep up the amazing work you are doing.
In college I really struggled to even listen to the complaints of my friends. I lived in a sorority house and the issues the girls had were so silly to me. I spoke with an adult friend (Kristen Downing – I think you know her, Brittany) with CHD and she told me about the work she does staging houses. She’s an amazing interior designer and I actually met her through my mom who is a real estate agent and hires Kristen for staging and photography. Kristen finds that she is really skilled at helping sellers clean their houses and get them ready to go on market, partially because their problems are so much smaller than hers! Yes, the anxiety of the sellers is very real and difficult. Kristen can see when it’s just a matter of packing up boxes of books, or replacing the couch. She can help them work through obstacles because she’s been trained all her life to do so with her health. And she much prefers helping other people to fighting for her life!
This is an attitude I’ve applied to all my relationships. I love giving advice to my friends or my partner. It’s a nice break to work through their problems instead of my own. It is a HUGE problem to them, but not a life-or-death crisis, like the problems I’m personally used to.
I also find that in my life there are a lot of problems I can’t solve (friends dying all the time, etc), but some things I can take control over (cleaning my room, editing photos, etc), that overall make me feel better.
Helping other people makes me feel better about myself and just more optimistic in general. Solving one problem can give me the push I need to solve the next. Perhaps you can apply this with your boyfriend – spending some time comforting him, distracting him (retail therapy?), or doing a task for him (maybe some paperwork you can do on your computer?) might make both of you feel better.
Let me know if I’m totally missing the point – not sure all of what’s going on in each of your lives. As always, I am here to help! Wishing you continued healing and love.
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Thank you so much for the response Kathleen. That is really helpful and you definitely understand where I’m coming from. I always tend to focus on everyone else. It gets hard when I need more from someone who is having a hard time themselves. Fortunately, I was able to work through that with him and he was very stressed from his job and ended up working out a solution. I am always trying to by mindful of the ways that I can still be myself and show some support and positivity even if I’m going through something difficult. I have done that my whole life and it’s just something that I’ve been used to as far as pushing my own problems to the side to focus on others. It’s hard to understand that other people need practice with doing that and it doesn’t just come naturally for many people, especially those who haven’t been through the medical side of things (like my boyfriend). It’s a learning process for sure! Thank you for the support and understanding.
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Nicely written! I can totally understand what you are trying to say. I have a better idea now. Thank you.
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Thanks for reading this Stephannie. It can be stressful, especially when a partner is going through a difficult time because there is only so much that I am able to do to help out and always wish I could do more.
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I have been married for thirty four years to a now retired general medical practitioner. It is my second marriage. He is a highly intelligent person, not romantically demonstrative and has always thought of himself as “different” and a “loner”. He does not like socialising , but his family and friends , including my two children from my first marriage, think the world of him. Until the last two years I would have described our marriage as happy and even ( on a good day) described us as “soulmates” . When I was very ill in 2012 he nursed me back to health with no consideration spared. He was wonderful
That is why it has come as such a shock that since my stroke and the discovery that I have CTEPH, his whole attitude to me has changed. This became even more pronounced after my pulmonary endarterectomy surgery, which wasn’t as successful as had been hoped. It meant that I can do virtually nothing around the house, including cooking , housework, everything that I have done for over thirty years. I should point out that I also have Parkinson’s Disease and very severe osteo-arthritis and am unable to stand for more than a few minutes and cannot walk more than a few steps. Couple this with extreme breathlessness and being tethered to an oxygen concentrator most of the day and night and you start getting the picture.
This has meant that my husband, who has never been interested in household issues , has had to take over the running of the house. We have a cleaner and a gardener and I try to sort the laundry, iron a bit and plan menus and shopping lists but he has responsibility for all the shopping, cooking, washing and drying not to mention sorting the logistics of running me to appointments, lifting out and constructing my portable mobility scooter and wheelchair and he chooses to oversee my oxygen and all my medication. All these practical things he does very well and I can’t fault it, and when he asks whether he looks after me well enough I have to say yes.ButEver since he retired he has yearned for intellectual stimulation in his life and he hates the imposition of this life of mundane , dreary tasks. I think he feels trapped and consequently has become incredibly irritable and short-tempered, especially with me. He complains that “he has to do everything around here”, he finds fault in almost everything( or so it seems) I say or do – I don’t do the recycling right, I spend too much time in the chair on my computer, he has to worry about me all the time, I always forget where I’ve put my keys. etc .I often feel , from the way he talks to me , that he despises me. He denies this but we are totally unable to talk the issues through as he immediately explodes in a fury and storms out of the room, forbidding me from following him. He also has put me down in front of the ( adult) children and has forbidden me to make certain domestic decisions in my own home.
While all this has been going on he has been given a diagnosis of Asperger’s Syndrome, which he feels explains a lot about his character. He reacted much more adversely to the diagnosis than I had anticipated . I suppose I thought it would be a case of ” well you’re still the same person, so nothing is any different”. But now it almost feels he is creating a caricature of himself. He is intransigent and harsh and just says it is “how he is”. He also has some problems with dizziness and diverticulitis which has been investigated but sometimes spends days either in bed or bemoaning how he feels and it has certainly been used as an excuse not to visit the family or attend friend’s social occasions. I am afraid I have been guilty of thinking ” Hey, who is the ill person here?” I know that sounds so selfish but I try so hard to be as normal as possible while feeling so wretched, I don’t see why he can’t do a bit of the same. I feel that whatever time I have left is precious and I don’t want to spend the time feeling so hurt and such a burden as I do now.
A side effect of all this is a loss of my identity. I no longer feel an adequate mother or grandmother. I used to feel the hub of the family but now I am the sick, disabled, physically bent vestige of the woman who at one time could advise
and counsel. I certainly feel I have lost all autonomy in my home. I don’t even know where things are in the kitchen cupboards as my husband has moved everything and they are now much better than my old way. (apparently). My requests are ignored and decisions upturned. I feel I have no control over anything in my life. I really feel quite bewildered as to why all this is happening. My husband says it is all down to me, but I don’t know why !Oh dear , now I feel that I should delete that rant. But it has taken a long time to write and maybe it will strike a chord with someone in the group.
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Oh Lorraine, thank you so much for sharing, and please do not delete this. Writing out your feelings is so important for processing, and because you have shared your thoughts here, we can tell you that your feelings are valid and appropriate. I will write more, but want you to know at this minute that I am holding you in my heart and sending virtual hugs. You are so strong!
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You and your husband are grappling with exceptional challenges. What forms of support do you each have? It sounds like he is fairly isolated, but you have your adult children for support. Are there friends in your life who can support you individually?
As much as you can, try to find things you enjoy on your own and have your husband do the same. If he needs outside stimulation, maybe he can audit a class at a local college? As much as you might want to, you can’t fill each others’ needs completely. Having some separate activities is important for the health of your relationship. (I think – I’m 25 so what do I really know?)
This sounds like a cop out, but if it’s possible for each of you to see a therapist, I think that might help you both work through the individual issues you are having with your diagnoses, and potentially improve your communication.
Please don’t feel that it’s all on you. That’s simply not true. From what you’ve written, you are working really hard and pushing yourself to do more than should be required of you given your health status.
My final recommendation is to try to lead with love. I can tell how much you love and admire and empathize with your husband. I don’t think he despises you. Try “I love you” instead of “I think you despise me.” Accusations aren’t productive so start sentences with “I feel…” instead of “You…” If he gets upset with you, apologize and say “I didn’t mean to upset you. I love you and want us both to be happy.” Life is short, make sure he knows how you feel.
I am sending you love and strength in this super duper difficult time. I wish you weren’t experiencing these challenges.
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Dear Kathleen,
for a person of 25 you make a lot of sense ,thank you. Your “final recommendations” are very wise and I shall put them into practice. It may be a little difficult at first as I feel so hurt but I know this is the way to go. As to your other suggestions he has started volunteering with a charitable organisation and I have started an art course. We have five adult children between us but although they are very supportive they mostly live a long distance away. My son, who lives in the same village is going through an acrimonious divorce, so is not really able to provide too much support at the moment. Unfortunately we each lost our best friend over the last year and so we are both a little isolated when it comes to friends. Also I find it difficult to confide in others because I feel disloyal. We have each had therapy and believe it or not I am a retired counsellor and psychotherapist myself. I was pretty good at my job but rubbish when it comes to sorting myself out ! We both are members of the University of the Third Age but my husband has been to more lectures than I have, mainly because of my health.
You advice is very sound and your supportive words are greatly appreciated. It restores some faith in one’s fellow man in this very strange world when someone takes their valuable time to respond to the needs of a stranger. Thank you Kathleen.-
Lorraine,
I have such a huge amount of respect for counselors and therapists and I can understand that it’s one thing to be good at your job and give such amazing advice all day long but it’s a completely other thing to follow it yourself. I am always the best at giving advice to others and struggle with doing that very thing myself too! I can understand the feelings that you are going through especially if you are feeling like you aren’t doing enough. I don’t think it is EVER okay for a partner to throw in our faces what we can and can’t do. I always think it is harder to swallow when someone else points out the things we can’t do. I try to shift the focus on what I CAN do. It’s only normal to feel some type of sadness and even anger at what we are unable to do because of our physical limitations. My boyfriend has felt my anger as well as his own and sometimes expresses it in difficult ways that seem very attacking. In turn, I can easily feel discouraged, and always bring up “I didn’t choose this. If you want to choose to be with me we have to come up with a system that works for us”. The good thing is that he doesn’t complain if I can’t make food or struggle with cleaning some days. If anything, he will just buy food for the both of us on those days. I’m rambling too. But I completely understand how awful it feels. I also worry a lot if I am holding him back from doing a lot more with his life. He has told me over and over again that he still chooses to be with me and he “knows what he signed up for”. It’s hard to understand that our health is so unpredictable and this in itself can be a stressor in a relationship. Hugs to you! Reach out any time to vent about this.
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Thank you so much for your support Brittany, It really does help and I feel much less alone. I’ll try not to rant too often !
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Lorraine,
Feel free to rant any time!!!! I love venting here because you all just “get it” in ways my other friends and support system wouldn’t be able to. That’s what we are here for! -
Exactly – this is the place to rant!
Brittany, your point about not choosing this disease is so key. I often feel like a burden on my family and don’t want to put that on another person who chose to have me in their life. But the disease is not me. I did not choose it. It’s something anyone who wants me in their life has to deal with alongside me.
It helps me to think about the friends I have who are chronically ill. Yes, I know that having them in my life may cause extra stress – that I may have to walk slower with them and help them do things and have them turn down invitations to hang out. That I may outlive them and grieve for them. Very rarely do I think about that, though. I just think about all the awesome things about them and all that I get out of our friendship. I wouldn’t trade that for anything. The people in your life should know you are worth the highs and lows, and they should thank you for sharing life with them. The darkness is a gift, too.
I saw this quote the other day and it resonated.
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Kathleen,
That is such a powerful quote ! Thank you for sharing that! So true, I couldn’t agree with you more on everything you just said.
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The hardest part is not knowing how each other is feeling. I didn’t know until our roles changed when my wife almost died from a fungal lung infection and sepsis. I realized what it was like to not know if she was going to be able to come home from the hospital. We went through a hard 2couple of years but now we talk about what I face every day and she understands that I can’t always get up and go to family functions. I understand how it feels to be stuck in the house when she didn’t feel like going out. In a way we are lucky to have been through so much together because it has made it easier for us both
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Jody,
It certainly is a learning experience together. It’s hard for me when I know that my boyfriend is feeling frustrated or upset and I always seem to internalize it as a fault of my own instead of actually taking time to let him process it and talk about it with me another time. Sometimes it’s hard for a partner to express how they’re feeling because, like us, it comes with a lot of mixed emotions that are often difficult to even pinpoint. I’m glad you are both understanding of each other even though the situations may not be ideal! Coming to some understanding and acceptance together is one of the greatest challenges of being in a relationship with someone who is chronically ill.
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