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Finding Others Who Get “It”

The first few years after being diagnosed with psoriatic arthritis I felt like an outsider. None of my friends or family members could understand how I felt physically or mentally. No matter how hard I tried to appear “normal” or live like there was nothing wrong with my body, this awful disease was always reminding me that I was different. Although I tried to explain my illness to my friends and family, it was impossible for them to fully understand my daily struggles and challenges.

Finding my chronic soulmates

I will never forget the day I first met my husband. Even though it took us four years to go on our first date, it was love at first site for me. After we began dating, I realized that this guy was pretty special because he loved me even with all of my quirks. Meeting others with the same or similar illnesses is much like that. These people not only understand what my life is like, they are living it too! My chronic friends don’t make me feel guilty for having to cancel or reschedule plans. They understand that the reason I haven’t answered the phone is because I can barely lift my head from my pillow or I am taking a nap. While I would never wish any of my chronic illnesses on anyone, I am thankful to know that I am not alone.

Learning to share

Until I made a few chronic friends, I failed miserably at explaining my pain and daily challenges to friends and family. One reason for this was because I didn’t understand the disease myself nor did I have anything to compare it to. Conversations with my chronic buddies help each of us recognize similar activities or triggers that may ignite a flare. We share what has or hasn’t helped us. Sharing our trials helps us find solutions or methods we didn’t think about to combat our challenges. Personally, the sharing aspect has gone beyond my chronic circle. Because I became comfortable talking to someone who understood what I lived with I later became comfortable having the same conversations with friends and family. This was partly due to the fact that I had learned to express how I was feeling and acknowledge that I was ill. It was also because I found better ways to reply when someone dismissed my condition. My chronic pals are very special to me; they encourage and empower me to live the best I can despite having this wretched disease. Best of all, their friendship has given me the courage to share what my life is really like with others instead of pretending to be like everyone else.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Psoriatic-Arthritis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • TValle
    1 year ago

    How do I find friends or support in my local area ?

  • CathyD moderator
    1 year ago

    Hi @tvalle, this is a great question.

    It may be worth connecting with the National Psoriasis Foundation – they regularly run events and have communities all over the US: https://www.psoriasis.org/in-your-area The Arthritis Foundation also has support networks and lists local networks here: https://www.arthritisintrospective.org/arthritis-support-network

    Another option is to do a Facebook search – sometimes there are groups set up for specific areas. And lastly, if you’re working with a medical team or hospital, definitely check in with them – they may have a group set up or an option to connect with others going through similar issues.

    I hope this is helpful! It’s great to have you here as a part of this community. -Catherine, Community Moderator

  • lhcobb1611
    1 year ago

    I have been dealing with a horrible flare since March. I have missed so much work and just want to sleep all the time. My rheumatologist has said that I am 1 in 5% of those being treated with biologics to build a resistance to them. I have dactylitis in fingers on both hands and my toes. I just want to cry all the time. I want my life back! But my doctor says it takes time to let the medications work. I can’t take the NSAIDS for pain because I’m on Pradaxa due to AFIB. He says he can’t prescribe any pain meds. I’m so depressed….wondering if I should seek a second opinion…. They have tried Cosentyx, Cimzia, and now I’m trying Stelara. How long is a reasonable amount of time to suffer like this? I feel so isolated….

  • CathyD moderator
    1 year ago

    I’m sorry to read that you’re flaring, and have been for so long now, @lhcobb1611 🙁 The medications can take some time to kick in, unfortunately. A second opinion may not hurt though… We have some information on alternative ways of managing pain, which I hope may be helpful: https://psoriatic-arthritis.com/clinical/alternative-options-managing-chronic-pain/ Hang in there and please feel welcome here anytime you need support – you don’t have to go through this alone. Hugs! -Catherine, Community Moderator

  • GrammieWow
    2 years ago

    I met a very caring rheumatologist who along with a dermatologist diagnosed my psoriatic arthritis… to finally have a diagnose was such a relief! I knew it was more than fibro, I was in a flare up with no end… for months. Problem is, she relocated… my first appointment with her replacement went so badly I ended the appointment – all she wanted to do is prove her predecessor wrong it seemed! I haven’t been able to get a good visit with any rheumatology professional since! They’re all friends apparently!! Thing is, I think the methotrexate was helping… in hindsight & now I don’t know what to do!!! Any advice? Similar stories?

  • VickiN moderator
    2 years ago

    GrammieWow, I’m sorry you lost your favourite practitioner. it can be difficult to find another connection like that! So your new Rheumatologist took you off the methotrexate because she didn’t think you had PsA? What sort of tests did she run? Have you exhausted all the Rheumatologists in your area? Sending a hug to you today, it’s so frustrating when our Doctors don’t listen to us. Warm wishes,
    -Victoria, Community Moderator

  • Cynthia Covert author
    2 years ago

    Hugs!! It’s so hard finding a physician we trust and who gets our pain. I lost mine when I moved from Arizona to California and after 7 years am still searching. I hope you find one soon.

  • suffering
    2 years ago

    Hi Rebecca I wanted to reply to your reply, but there is no ‘reply’ button. lol
    I did try several GP’s, each time I moved area. That’s why I ended up seeing a panel, because I guess they were sick of me. It isnt the GP though, the rheumatologist dept covers a very wide area. I won’t get NHS treatment outside the catchment area and I guess the decision would be the same anyway. If I had thousands to spend on lab tests I could shove those in front oft them…. But like you said, so many people are getting the same. They COULD diagnose it, but NHS funding won’t allow for the right lab testing.

  • suffering
    2 years ago

    My trip to the Rheumatologist was very upsetting. I asked for a second opinion because she did not belive it was PsA. She said all my issues were due to fibromyalgia and possibly osteoathritis. At the panel (of four) they refused to look at my skin or nails, saying ‘they are not dermatologists’. They dismissed my print outs from all the reputable sites on PsA such as the Psoriasis association, foundation, and those for athritis. I wanted to show them that I fit the criteria for PsA and have all of the symptoms.
    I was made to feel like a fool, on trial with no sympathy or humanity whatsoever. I burst into tears and went home angry. Nice

  • suffering
    2 years ago

    Forgot to add – They said ‘there is no connection between psoriasis and psoriatic arthritis’… ! How ignorant that they would not even look at the papers showing otherwise. I also said I have very dry eyes, lower back stiffness and pain and my fingers on my right hand are changing into twiglets. They said ‘wear and tear’ and oh… get this… ‘the dry eyes are due to anxiety’. LOL What a joke the NHS are.

  • Rebecca moderator
    2 years ago

    WOW that’s just unreal, @suffering! It never ceases to amaze me at how many members have similar stories about not being taken seriously – and being dismissed. It’s truly disturbing.

    I know this is probably the *last* thing you feel like doing right now, but are you considering looking for a new doctor? I wonder if there are any local facebook groups who can help recommend?

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