Pulmonary Hypertension News Forums Forums Awareness and Advocacy Who is your advocate when you find it hard to advocate for yourself?

  • Who is your advocate when you find it hard to advocate for yourself?

    Posted by Brittany Foster on March 28, 2019 at 1:57 pm

    Sometimes, my emotions can get in the way of letting people know exactly the kind of help that I need. In the moments when I feel a lot of frustration, sadness, and anger, I have a hard time communicating and advocating for myself and expressing what would be helpful. Usually in these moments, I rely on others to help me by bringing me to a head space where I feel calmer and can think more clearly. Sometimes I also need that person to be my advocate for me, make phone calls, send emails, get in touch with pharmacy staff or doctors etc. Sometimes managing all of that on my own can feel like just too much.

    Luckily I have people in my life to help me advocate and who will take over the advocacy for me and my health needs. Usually I rely most on my mom (who has been through this with me since birth) , my friends who have also gone through similar struggles and just “get it” and understand the frustration, or the medical professionals and therapists in my life who I trust. I am grateful to have support systems in my life to help me advocate for myself.

    When your find it hard or overwhelming to advocate for yourself, who usually helps you? What is most helpful for someone to know who is trying to advocate for you? What does your advocate do that makes things easier for you?

    Brittany Foster replied 5 years, 3 months ago 4 Members · 8 Replies
  • 8 Replies
  • jen-cueva

    March 28, 2019 at 4:37 pm

    Definitely a great discussion!
    These daily things can often overwhelm us and I have to say I tend to burn out at times.

    My hubby is my main Advocate, although my Daughter can,but I often , he estlg try NOT to involve her with too much of my PH tasks. But , living with this every day and my hubby is the one with me the most, he’s the best Advocate for me and he’s very good , I must say! It wasn’t until a few years ago after a few hospital visits when I was out of it and he didn’t have a clue on some of the details as far as exact dosages, 3 different pharmacies, etc, but he is now!

    Also, if you have nursing or financial needs , my Cigna case managers and personal champion are great to help ! If y’all have these people to help with getting referrals, testing pre authorizations, etc. available, please use them! I didn’t until the last 2 years , it helps tp get some weight off of us some as well! Check with your health insurance companies to see what they may offer. I just learned last week Cigna has a Behavioral/Mental Health line where you can call and talk if you have anxiety, depression, etc. I have a new RN Case Manager and after she called to check on me after my hospitalization, she told me about that benefit as well.

    • Brittany Foster

      March 29, 2019 at 7:56 am

      Hey Jen,
      You’re certainly blessed to have the great support that you do. I feel like for our significant others it’s sometimes a “learn as you go” type thing. And I find that my boyfriend learns best from personally experiencing it with me and seeing what I’m going through and what the doctors say firsthand, not just what I’m telling him.

      I have recently been using the RN for my insurance that is the patient advocate and she is such a great help and it’s a wonderful service that they offer. She makes sure that I have rides to my appointments, have somebody helping me at home with managing all of this, etc. It’s really great that they do that for us. And I also know about their behavioral health line although I have never actually used it. Have you? I’m lucky to go to a therapist once a week sometimes twice as of lately and that really helps me out a lot just to get out my frustrations and anxiety (because I have a lot of it) !

  • Kathleen Sheffer

    March 28, 2019 at 4:51 pm

    I struggle with this, too. My caregivers and I have developed some code words I can use to clue them in when I’m struggling to communicate well. For instance, my parents and I plan ahead before a major surgery because we know I’ll be a mess coming out of anesthesia. We have to find ways to refocus our efforts and position ourselves to be on the same team. Otherwise my emotions can get out of control and force them out of the room (this has happened so many times)!

    In the last week I’ve had three major panic attacks and each time my boyfriend has come to my rescue, despite me lashing out at him in the moment. I’m getting better at telling him I need help. He’s getting better at reading between the lines and knowing what I actually need is different from what I might be saying. I have a rescue medication, but being held while I’m crying is the only surefire way for me to calm down.

    I’m embarrassed to admit all this and still feeling overwhelmed. I want to find a way to manage everything myself, but I’m realizing the best way may just be to know how to ask for help.

    Do you feel similarly?

    • Brittany Foster

      March 29, 2019 at 8:01 am

      Kathleen I can totally relate ! It’s as if you were just at my therapy appointment as ME ! So strange because I was just talking about this yesterday with my therapist. How a lot of my really strong and soft on the inside emotions like fear, sadness, hurt, come out as anger externally. So the internal emotions aren’t matching the external emotions. I have been better at knowing that I’m like this so I usually will apologize or give people some type of warning beforehand so they know that this is how I react to these really high stress situations and this is what I need. Sometimes I find it better for me, to just walk away before I start really saying things that I shouldn’t and before what I like to call “exorcist Britt” comes out. Legit I feel like Linda Blair in the exorcist when I’m like that sometimes. It’s so hard to manage that and a lot of that anger and fear really is a lot of difficult anxieties and sadness that we just aren’t communicating because it’s so hard to communicate that in a way people understand. Always here to reach out to. I also have been having a lot of panic and anxiety lately and totally get it.

  • jen-cueva

    March 28, 2019 at 9:17 pm

    Ohh Kathleen, you’re definitely not alone!, Hugs to you …

    Often, my hubby tried to comfort me but once I’m already overwhelmed and I have anxiety issues, I tend to lash out at him at times as well. I’ve always heard we Hirt the ones we love the most when we are suffering! I feel so bad afterwards and like yourself a hug and just validate my feelings is what I often need!

    I’m on meds for anxiety as well but don’t always like to take it! Like yourself, I need the hg and comfort mot of all.

    I know for myself, when I’m in the hospital or feeling my worst so when I’m the mean person as I like to call it, lol
    Most of the time , I’m loving, very good , positive so he usually knows when I’m just feeling awful or just overwhelmed! Thanks to our partners and families for dealing with us at our worst!

    I definitely have always felt I needed to tend to all myself,as I’m just a caregiver by nature, but I’ve come to realize, often at my doctors suggestion as well, that at times, I, too, need help! It’s embarrassing and I often will not ask for help…I think just realizing that at times can be scary as hell!

    • Brittany Foster

      March 29, 2019 at 8:04 am

      asking for help is the hardest thing in the world because it means you are putting yourself in a vulnerable position and trusting another person. This has always been hard for me to be vulnerable especially with a history of PTSD from medical surgeries when I was a child and didn’t quite understand what was going on. I usually do not like people coming to visit while I’m in the hospital because if I’m on medication or in pain or upset I’m just no fun to be around and I don’t want others taking that personally. As I said to Kathleen in the above comment, I usually give some type of warning beforehand just so people know what’s going on and what to expect so they aren’t as “caught off guard” by my behavior.

  • VK

    March 29, 2019 at 9:53 pm

    I stick to my online friends in this case. Obviously y’all can’t advocate for me directly, but at least you can help me figure out how to advocate for myself.

    • Brittany Foster

      April 1, 2019 at 8:49 am

      I’m glad we can help with that and that you have found this forum VK! That’s exactly what part of our goal is. Helping others advocate for themselves also helps me advocate for myself too. I’m usually better at giving advice to others and then stop and think “wow that made total sense. maybe I should do that too!”

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