Feeling hopeless with psoriatic arthritis

By onelessthan1

2 min read

I am 28 years old and last year I was diagnosed with psoriatic arthritis. The main areas that are affected are my hands, they were inflamed constantly for 2 years prior to my diagnosis. I have not yet started medication due to delays with covid.

How PsA has impacted all aspects of my life

Firstly I realize other people here suffer with far more extensive forms of this disease and I admire every one of you that has managed to make the best of this horrible situation and continue to live a full life in spite of it. But I fear that's not for me. Before I developed this disease, I was a professional tattooist, a gym rat, avid climber and even competed in mixed martial arts tournaments. My whole life I defined myself through my body and what it was capable of. Then one day my hands balloon up and I simply can't do ANYTHING that I enjoy or am good at anymore... I had to leave my dream job, ditch all of my hobbies and the social circles I made through them. I am more alone and depressed than I have ever been.

Varying experiences make expectations hard

I have browsed a lot of stories and it's so difficult to find a representation of what to expect, even the biggest successes seem to be periods of remission followed by semi regular flare ups. It remains a problem. I'm not sure if this perspective is skewed because people with complete remission don't continue to use sites like this and share their successes, but everything I read just makes the outlook seem more bleak. PSA seems to permeate every aspect of life, even after treatment.

Feeling hopeless about life

I respect you all so much for living with this, but I know my own limitations. I am unwilling to settle for an imperfect fix, knowing that my life will be forever worse. Giving up on my dreams, re-evaluating my goals.. I just can't do it.

I told myself when this nightmare started that if I could never be the way I was before or live the life I SHOULD be living, then I was done. I know I'm selfish for being unwilling to compromise my goals for my health. But I've lost EVERYTHING because of this and whatever half-life waits for me at the end of this road.. I don't want it. The prospect of continuing to live, knowing what I've lost is beyond soul crushing.

Sorry for the long post guys, I just needed to say that to someone. I wish you all the best and hope that one day they can cure this so nobody else has to feel this way.

Sorry for bumming you out.

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minelcannucciari Community Admin
Hi <inline-mention user-id="3317777" username="onelessthan1"/> , thank you so much for sharing your story. It's very brave of you to talk about the challenges you're currently facing. It can be so hard to try to process all the loss that you're experiencing from the life you had prior to diagnosis, it's something unfortunately many people face, so you're not alone. COVID and not being able to get the treatment you need also must be so difficult to go through the days with so much pain. I hope you are able to start medication and find some relief soon. Please know that the community is here for you. If you need any resources or just more space to vent, don't hesitate to reach out, and please keep us updated. Sending hugs, Minel (Team Member)
Vickie Wilkerson Moderator & Contributor
Hi <inline-mention user-id="3317777" username="onelessthan1"/> . I am sorry you are in so much pain both physically and mentally. It is hard to have to give up on a dream. We can all relate. Do you know that the National Psoriasis Foundation has a program called One to One. It is a program where someone new like yourself can be paired with someone that has lived it who can talk with you through the struggles. Although you might not can see it now you are brave because you have already shared your story with us. Hang in there. Once you start treatment and find something that works there is nothing stopping you from being a tattoo artist again. Yes there will be bumps in the road but you can and will navigate them. I am willing to talk to you should you want. Gentle hugs sent your way. Vickie W. Community Moderator
Lori.Foster Community Admin
Hey @Onelessthan1. I personally believe that what you wrote is true, that people who have PsA and are doing well on treatment do not come to sites like this. They don't think about their PsA day and night, so they don't need us. My brother is one of those people. Without medication, he was a mess. He had psoriasis everywhere and was in so much pain, he could barely move most days. He also had constant vertigo. He was about your age when he was finally diagnosed. Now, he is nearly 50 and completely pain-free and psoriasis-free, thanks to medication. Not everyone is so fortunate. PsA presents differently in everyone and the medications behave differently with everyone. It can take lots of trial and error to find the medication that is most effective for you. If you want your old life back, you will need to be patient. The first medication most doctors will try in Methotrexate. For many people, that will be the only medication they ever need, but others will move on to biologics, and might even have to try several of those before finding the right one. For my brother, both Humira and Enbrel were effective. I know this diagnosis is overwhelming, especially because your sense of identity is so closely tied to a healthy body, but this is just a big bump in the road. You can do this. The medications can be expensive, but most drug companies will offer financial assistance if you reach out. The makers of Enbrel cover all of my brother's copays. You've got this. It's natural to mourn for a while at first, but it is time to face this PsA thing and figure out which treatment plan will be best for you. Sending the best of all wishes! - Lori (Team Member)
Jill.Brodie Community Admin
Hi <inline-mention user-id="3317777" username="onelessthan1"/> , I can hear how difficult this has been for you. I am so glad you have found our community and I admire your bravery for sharing your story with us. I can understand why you would feel so sad and alone with all of what you are going through. I hope this site provides you with a small bit of comfort knowing you are not alone. Having to deal with covid and not being able to start medication, adds a whole other layer of distress. Because you haven't started medication, you don't know what to expect and I am sure the unknown is taking such a toll on you. Are you able to get an appointment with your doctor? I wish you weren't going through this. And there are great success stories out there, please try to stay positive. Sending hugs. Jill, Team Member
adam92 Member
Hey <inline-mention user-id="3317777" username="onelessthan1"/> , Reading your story has brought back a lot of memories to me, seems we have a bit in common. I am also 28, was diagnosed about three years ago now but like you had long 2-3 year road to get that diagnosis! IT SUCKED! Before PsA it sounds like we would have got on a lot! I used to hit the gym a few times a week, white water kayaking, mountaineering, MTB, climbing etc basically anything active and outdoors. I also had a physical job that I LOVED! (Aircraft Mechanic) I had a really hard two to three years until my diagnosis having to give up everything I love to do at some point. However getting the diagnosis was the start of a new chapter, better medication, management and understanding from my self has helped me get back on the bike (literally!) and I am now back WW Kayaking, hill walking, MTB and back doing the job I still love. Don't get me wrong I am still searching for a perfect fix trying different drugs, routines and learning myself and I still have bad days, weeks and months however knowing that I have, can and will get back doing what I love at some point is what gets me through the hard times. I know that PsA affects everybody in different ways but there is light at the end of the tunnel! I am sure that there will be a treatment out there that will help you get back to a life which is rewarding, challenging and enjoyable! (I would not have believed I would ever write that a year ago.) I am really sorry to hear that Covid is getting in the way of your first appointment, have you tried calling the Rhum department to see if you can get a telephone appointment to at least get the ball rolling, or at least some better pain management even getting half a night of decent sleep can help a lot with this condition, something that good pain management can help with. If the Rhum can't help yet maybe push your GP? I had to a lot even after my diagnosis. I hope this finds you at least a little better than when you wrote your post, if there is anything you would like to chat over feel free to send me a message!