Psoriatic Arthritis Pain Changes People

By ClairG

2 min read

Photographs are the one single thing that triggers emotions and memories for me. This morning I retrieved a box marked “precious photos” that has moved with me and been in storage for a long time. A treasure trove to say the least.

So much has changed...

For the next few hours, I took myself and my daughter on a trip down memory lane. I laughed, I told stories and I realized that all of these photos are from before I got sick.

So much was different then, and I do not think that until today I have really absorbed and realized exactly how much has changed for me since my diagnoses. I would be lying if I said this did not bring me a measure of sadness.

Is it part of growing?

The woman in those photos is younger, with not a grey hair in sight, she had a lust for life that could rival some of the happiest and enthusiastic people I have met in my lifetime. Nothing weighed her down; I realized with a slight sadness today, that I miss her.

There is no way to pinpoint one specific thing that happened, no one single day or event that stands out and makes me feel “that was the day it changed for me.” My personal opinion, (which is not always a popular one) is that it was the accumulation of many small things along the way. The things that I took for granted or did not notice at the time.

If someone had said something to me at the time, I would have dismissed it and claimed it was part of growing. Being partially stubborn by nature, okay probably a bit more than partially, I would vehemently deny anything more than growth.

Pain and emotional turmoil

Over the years so much has changed since my diagnosis. If I sit and look back, I can tell that I have aged. Not just in years, I have aged in person and I am not sure that it is a good thing. The years of battling constant pain and emotional turmoil that walks hand in hand has almost brought me to my knees.

There is a saying that says pain changes people, I can vouch for this. The level of pain that most of us deal with on a day to day, minute to minute basis is nothing short of, too much to handle.

We do handle it though, some of us with less grace than others, but we all show up. Every day we go at it again and we give it our best.

More than just my illness

It is time for a change. Time to start paying attention to more than just my illness, it is time to find that spark again, that everyday lust for life despite the pain. I still have moments of pure joy, and I am not suffering from unmanageable depression.

It would be wonderful if the frequency of these moments can be increased, if only by a little. I am no fool and am well aware that I will not be that woman to the T again. Time to remind that I am not already 34, but that I am only 34 and there is so much living to still be done. I need to do more than just exist, I need to live.

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.

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bmk1 Member
Beautifully written. Your words touched my heart, as I too have done a similar thing with both my daughters. I feel your sadness. Sometimes I think I am going through the bereavement process and grieving the lost of that person I once was. I like you get up every new day to forge and fight on. Some days I manage better than others. On the better days I can fake a smile, on the horrendous days when the pain is coarsening through me, I am literally a dragon. But putting this aside, what’s remarkable is that I get up each day and keep moving in.
1. Lori.Foster Community Admin
 That must be awfully uncomfortable, <inline-mention username="pileah" user-id="3307802"/>. I am glad you found something that helps. Wishing you the best! - Lori (Team Member) 
2. lazario49 Member
 <inline-mention username="bmk1" user-id="3315581"/> I feel the same, sometimes it’s hard to push on, I work in an assisted living and everyone always says how peppy and happy I am but 60% of the time I’m faking it because I hurt so bad
celesteisme Member
Oh Clair... it's not often I read something on this amazing website that brings me to full-on tears while trying hard to get through another workday... Today was that day. I feel your pain... literally. I am changed. Today I cry because I can never go back. Thank you so much for your truth. Tears are good sometimes.
1. ClairG Moderator & Contributor
 <inline-mention user-id="3279435" username="celesteisme"/> - I truly believe that tears are our way of dealing with big emotions. Often when I sit and write , the tears roll. These are big things that we are dealing with so often. Love yourself for who you are right. You are amazing. -Clair.
debeec Member
My come to Jesus moment is when I view my Facebook picture from 9 yrs ago! A smiling beaming woman of 57yrs of age! I can’t complain about greying hair but more a look of anguish and facial qualities that appear distorted! Your article precisely validates what I felt this last 3 months, but felt odd thinking it! In fact the difference in my last drivers license and now is disturbing! Thank You for giving words to my secret fears!
1. ClairG Moderator & Contributor
 <inline-mention user-id="3282335" username="debeec"/> - Sometimes it can be so hard to find the words to describe what we feel. It warms my heart that you can relate to this, albeit I am sorry that you have to be able to. 9 years is a long time, and often it is only us that see the difference. Thank you for being here and for your kind words. Sending you a gentle hug from afar. - Clair
auntjana Member
Great article. So true. I feel as if I am only part of me now. That shopping, walking, cleaning, traveling, partying person is gone. Hell, showering is difficult and not refreshing anymore...... Family really doesn’t understand......maybe a bit but how do you explain how painful and difficult getting up from a chair or bed can be because you spent an hour or more in that position.....something so simple can be so hard to accomplish. Sometimes I feel so overwhelmed—tried it, done it, took it—leave me alone. It doesn’t work.....nothing does. Yet, here I go again —I am about to try a new biologic.....not supposed to give up, right?
1. lesomom Member
 Exactly how I feel .. on the same page. Family understands to the best of their ability but I feel like I just exist now.. I don’t live like I used to no matter how much I try. I could cry reading these posts they hit hard. Diagnosed with PSA 10yrs ago at 44 and am on my 7th biologic and Methatrexate shots weekly no real relief … use a walker daily and have hand controls in my car.. been having a bunch of feel sorry for myself lately… ugh
2. CathyD Moderator
 <inline-mention username="lesomom" user-id="3296355"/>, I am sending so much love your way! Feeling like this is completely understandable. You have been through so much in those 10 years, not only with the PsA but with all the different treatments too. It can be terribly disheartening. How long have you been on this seventh biologic? Please know that we're all here anytime you need to connect with others who truly understand. Soft hugs! -Catherine, Community Moderator
cordwood59 Member
i used to be a spur of the moment person ,jump in the jeep an take a ride ,that slowly changed over the years now i can not drive more than an hour or so im pushing it,gave up my harley riding years ago,thats all id need is to roll down ,game over ,its life changing for sure ,frustrating,i got it young,bothe knee s replaced at a young age an slowly more an mre screws an plates,its an adjustment ,dont listen to other people ,they just dont know
renegardener Member
I agree about missing the person I was, hard to think about and especially hard when my spouse wants me to be who I was.Now I just look for goodness in any day that has not been totally hard and move on and accept.
notfromhere Member
Thank you for your heartfelt words. I think I get as angry as I do sad and it is a loss that causes grief. It is a death of our former selves that most of us can never see resurrected again. I think most healthy people grieve at least a little when they look at old photos and see the dramatic changes time has impressed on them. How much more for those of us that have been robbed of normal living, we were slowly and incrementally robbed and could only stand by watching. That infuriates me to no end! I'm very much a prevent the problems type of person and if something does arise, then I'm a problem solver. With PsA and many other diseases, there's little in regard to prevention and the tools with which to solve the problem are often ineffective or useless. That said, I also have much to be grateful for and have many blessings that I appreciate. I think for many of us and I know for myself, we feel apprehensive about the future, simply because looking back a little we can see how things have unfolded in just a few years. I think this type of thinking hinders us in many ways. I've found myself thinking more and more that I won't be able to do such and such 5 yrs from now. Yet, I don't actually know that and it's no way to live. So, I will actively fight that mentality and instead of wondering if I can or cannot do a thing, I will make a plan that works within my current circumstances and go do it anyway. Our gym is re-opening next week and although I'm horrifically out of shape and will probably only last 15 minutes, I'm dragging my carcass down there and doing my own PsA tailored workout. I will start with 3 days a week for 3 weeks and go from there. We can't be exactly who we once were, but we can all improve in some areas, a little here, a little there. It's very hard at times, but it's good for the soul, the mind and even the battered body. Don't look back, you aren't going that way. 
1. Lori.Foster Community Admin
 <inline-mention username="notfromhere" user-id="3304227"/> Wise words, once again. I hope you enjoy your time at the gym and that you get back to pre-pandemic shape quickly. Thinking of you! - Lori (Team Member)
lazario49 Member
I’m alway in pain, I’m afraid to take the stairs because my hip/ legs in general hurt, one minutes I’m happy next I’m crying from depression. My daughter understands to a point but my husband doesn’t see the pain. I hate to complain
1. lazario49 Member
 <inline-mention username="Jill.Brodie" user-id="3290804"/> today is one of those days I’m really in pain everywhere, didn’t want to get out of bed and yesterday was my cry day. Got a call out to my provider to see if I can get a shot in my hip, thanks for responding, always helps just to talk about my pain 
2. Jill.Brodie Community Admin
 We are here for you @lazario49! Please reach out when ever you want to talk, we understand. I am so glad you called your doctor and I hope you can get some relief. Dealing with a chronic illness effects both our bodies and our minds. It is so important to talk about pain. I am sending over an article from one of our advocates, I hope this helps in knowing you are not alone. Jill, Team Member <a href='https://psoriatic-arthritis.com/living/emotional-well-being' target='_blank'>https://psoriatic-arthritis.com/living/emotional-well-being</a>
Diane T Moderator & Contributor
Hello <inline-mention username="lazario49" user-id="4232572"/> , I am so sorry you are going through this. It's hard I know. I started having symptoms of PsA at age 25. I am 64 now. My newest venture is falling downstairs. I don't want to stay in a home that I loved anymore. Please call your doctor about the pain, you should be able to get some relief. Please let us know how you are doing. Diane (Team Member)
hilababy Member
Funny how life finds me something I need to read, hear or see just at the right moment. I just started experiencing hip pain about a week to week and a half ago. Thank you for sharing your story. This makes me feel so not alone and confirms I’m not going crazy when a new ache, pain or symptom appears.
KimW Member
I too ignored the symptoms of traveling joint pain that led to more and more time on the couch and eventually depression. My rheumatologist suggested physical therapy and since starting just a month ago I am having some relief of pain and a much better outlook on the future.
CommunityMember526ab7 Member
I could not agree more that pain changes people but for me the change was very much the opposite in most cases to how it’s affected others. There was a time when I planned everything down to the most minute detail, would never have done anything spontaneous, and didn’t always exude positivity and a zest for life. I took for granted the fact that I would not get “sick” and that nothing would steer me off course. My CRP levels at their peak before my diagnosis hit 152. On one particular day, I was about one weak moment away from calling to see about doctor assisted death parameters. My spouse and I were separated, my young daughters were dressing me, my quality of life was in the negative and my body didn’t know sleep because it just hurt too much. But on that day, the pain changed me. I found a strength I didn’t know I had, got started with physiotherapy, started being grateful for every blessing I had in my life and learned that the best laid plans are sometimes meant to be blown to shreds. Fast forward a few years with ongoing biologics and methotrexate, I have a new zest for life because I know every day I’m on this earth is a gift. I plan around special events to make sure I have the strength and stamina to get through them but I stopped worrying about 15 years down the road and started living a lot more for the moment. Each day is a new day to look for the positives in our lives…to celebrate all that we are and all that we have DESPITE all that we deal with physically, mentally and emotionally. Pain changed me but I celebrate the fact that I am still here to see my kids grow up and start lives of their own. I’m still here to do the things(or at least most of the things for now) that I want to do and I’m still here to love everyone in my life with my whole being. I may struggle some days more than others but I’m still here to struggle and that’s a major win for me. Pain changed me for the better…
1. CommunityMember526ab7 Member
 <inline-mention username="Vickie Wilkerson" user-id="3316344"/> Thank you! I think we all still have low points but finding those blessings and finding little things to celebrate keep those lows to a minimum for me. So glad my post resonated with you. 
2. Eric_the_Eric Member
 <inline-mention username="CommunityMember526ab7" user-id="3292477"/> I absolutely can identify with all you said. I was diagnosed in 2010 after suffering several years, and my response was to just give in to the pain, and hope for a better treatment or cure. I wallowed in self pity, started drinking again. My disease never got as bad as what you describe, except for flares, but it was still a lot more than I was used to dealing with. I finally stopped drinking, stopped smoking, rediscovered my love for the outdoors and running, and determined to get myself in shape. I'm still an avid distance runner, albeit a frequently injured/sidelined one. But, the irony is, I'm happier, more fit, and more at peace with myself than I ever was before having this disease. And I take every day like it's a new and exciting day; walk the dog, go for a run, cycle 15-20 miles (sometimes, all three in the same day). I can't do anything about having this awful Psoriatic Disease, but, like you, I can celebrate my newfound emotional freedom.