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3 Things I Wish People Understood About Psoriatic Arthritis

I don’t expect everyone I meet to research my chronic illnesses. They don’t need to become a scholar of psoriatic diseases. However, it would be nice if they would take time to understand three simple concepts of what it is like to live with psoriatic arthritis and psoriasis.

It is more than a rash

Whether my lesions are not visible or my skin is clear for a time, I have not been cured. These are incurable autoimmune diseases that have many symptoms; the rash is just one of them.

Having visible skin lesions is not the only symptom of psoriasis or psoriatic arthritis. I presented other symptoms long before it decided to cover my body from head to toe. Later when my rashes were minimized to only affecting areas that weren’t visible to the general public, it was assumed that I was cured.

There is NO cure

Who knew that having an incurable, but not terminal illness would create such confusion? Yet, those who don’t have it or aren’t close with someone who does appear to have a hard time understanding that these diseases will be with me for the rest of my life. There is nothing my doctor can prescribe to completely stop my disease. Visiting the Dead Sea won’t cure me either.

It’s the toughest job I have ever had

I have had quite a few jobs in my lifetime, but nothing was as difficult as learning how to live with my chronic illnesses. Living with chronic pain and symptoms that would have the average person running to the emergency room requires daily attention.

Following a treatment protocol is just one task. You would think this would be the easiest, but when knowing that at best it is just slowing the progression and not healing the disease messes with your head.

Every day struggles with psoriatic disease

I spend every day and every moment of each day analyzing how my body feels. I find ways to work around pain and to reduce it as much possible. I pad my schedule with days to recover from major outings and have to get real about what I am really able to do. There isn’t a plan or decision that is made without having to take my chronic illnesses into consideration. I don’t just buy a car based on what I can afford and what luxuries I desire, nope, I need one that doesn’t increase my pain while driving or riding in it. It also needs to be able to haul around my mobility aids.

The emotional toll of psoriatic disease

Every day is spent fighting not just for my physical health, but also for my mental health. Depression and anxiety often stem from the inability to do things like I used to. My disability creates feelings of unworthiness and uselessness. Having to constantly justify my need to do things differently is exhausting and has led to periods of isolation for no other reason that I just need a break.

While there are many more things that I wish others understood, these offer enough information to convey that just because a disease isn’t terminal or always visible it doesn’t mean that living with them is easy. In fact, it is a constant battle, one that will not end until I die.

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

  • Georgina
    3 weeks ago

    I relate with this article like if I wrote this
    I need to write because not many people understand this illness. I was diagnosed late and my joint pain is unbearable at this time I’m taking Embrel but had to stop due to my immune system is very week and not able to take this shots. I’m not cooking a turkey or anything tomorrow and I cry when I cook something, the pain just gets worst. Thank you for writing this article. It helps ro think I’m not the only one living with pain. My financial situation is sad, got 5 children and appealing my ssi case.

  • Acceptance
    1 month ago

    I used the name Acceptance because that is what I have had to do. Once I did this and tried a variety of ways to deal with my PsA was when I was able to start living a satisfying life. By changing and experimenting with diet, exercise and meditation/mindfulness I have been able to come off constant pain medication (I still have breakthrough when needed). I still take the medication the doctors prescribe as I have found that all these things together work for me. I understand that it is different for other people which is why I suggest that one has to experiment for themselves to see what works for them.
    I agree with the “3 Things I wish People Would Understand About Psoriatic Arthritis” – so much so it brought tears to my eyes. I will never give up learning and exploring different ways to cope with my disease and make the best of my situation! Good luck to us all!

  • hopenoel
    8 months ago

    Thank you for your thoughtful piece. The everyday struggle part rings so true! That is my life. On Embral for last 3 months (cost is a whole other article). Glad to have all of you.

  • orangeglow1
    8 months ago

    I have been fighting a battle since 1991 and it only gets worse. I am so sorry you are so young and having this is no fun and people look at you like there is suppose to be a magic pill that will make you better. I only wish that doctors and nurses could understand

  • akennedy
    8 months ago

    I think I will print this and give it to people who just don’t understand. It really is half the struggle. I feel like everyone thinks I’ve magically just made it all up. Yes I understand that I was normal up until now, but have some compassion! Think about how hard it’s been on me trying to face the reality that life will never be the same. You nailed it Cynthia.

  • elksaura
    8 months ago

    I have resigned,to MY pain and hopelessness.
    Understanding by others, i hope nobody does,because I would never want this on anyone. All we can do is carry on, as best as we can.
    Peace to you, and your body.

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