A Psoriatic Arthritis Patient's Journey: The Consequences of Being Unreliable

By Leanne Donaldson

2 min read

There are a great many attributes that I admire in people: trustworthiness, loyalty, and honesty for example. Some of these are things that I’ve always strived to be and try my best to see in other people. But the one thing that I am no longer, because of psoriatic arthritis, is reliable.

Because of the nature of the unpredictability of psoriatic arthritis, I am probably the most unreliable person I know, and I hate it.

I'm not unreliable, just in pain!

I make plans and commitments with the best of intentions, only have to turn around days, weeks, or months later, and cancel them. I know that when someone asks me to do something, there will always be a voice in the back of their minds, reminding them that last time I canceled.

Last time, I wasn’t feeling well and didn’t make it to the movie, to dinner, or to the party.

I'm a different person. I need to accept that.

Until psoriatic arthritis entered my life, I always thought of myself as that friend that would always be there. The one people could call, at any hour, and I would be there. Now, it feels like those days are long gone.

Of course, my friends and family can still call me, at any hour, and I will do my best to be there, but because I’ve had to cancel so many times, it just isn’t the same. I’m not the same.

Managing feelings of guilt

I feel a great deal of guilt because of this. I know in my heart that it isn’t technically my fault, and life is too short to carry that type of guilt with me. But that doesn’t make the feeling stop.

It may not be rational, or right, but it is definitely there. Lingering in the back of my mind, the knowledge that I wasn’t able to be the person that I wanted to be.

Should I even commit myself, out of hope?

I even find myself not agreeing to do anything at all, fearing that when the time comes, I won’t feel well, then end up carrying the guilt of the canceled plans around with me.

If I don’t commit to go in the first place, no one will be disappointed if I can’t go, right? For a while this seemed like a good idea, and perhaps the best solution. The reality, not so much.

The pain of people eventually stop asking

But it soon became clear that if you say no often enough, people eventually stop asking. Which honestly, I thought that was what I wanted. If no one asked me to commit to anything, then I wouldn’t let anyone down, and in turn, wouldn’t feel guilty.

But all that really happened was that I felt more alone than ever.

It's all just a part of life with psoriatic arthritis!

I still struggle with the guilt of canceled plans. I hate that I’m not as reliable as I want to be. And I hope that it won’t be this way forever. But for now, I have to know that my friends and family, those that truly love and support me understand that this isn’t my choice.

Being unreliable isn’t who I am in my heart. And while I would love to change it, for now, it is just a part of life with psoriatic arthritis.

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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kq500 Member
Leanne, This is a great story. I have had this discussion with many friends and family members, and only a few really understand. Many times I have said to people....."oh that sounds like fun, but I will see how I feel." I have cancelled so many plans. I also don't plan too many things in a week. If I'm able to go to listen to some music one night, I anticipate I won't feel like doing anything for a couple of days, or even a week. I used to do some volunteer work, but had to stop that as well. I have been taking CBD oil for almost a year now, and it has helped me get off all pain medication, and I can walk now without a cane! However, I still get tired, and achy, and have a limp (due to the damage done in my left foot. ) So, I still have limitations. I wish you well.
1. Leanne Donaldson Moderator & Contributor
 Hello <inline-mention user-id="3295087" username="kq500"/> , Thank you for your understanding 😀 Learning to plan outings around our limitations is hard. I often find it difficult to say no when asked to do things. Sounds like you have developed a good use of the "recovery time" that comes with going out. So glad to see that you have had some relief using CBD. I've been using it for a while now too and it helps quite a lot. I hope you are well today! -Leanne, Author
imschmarte Member
This hit home with me. I went through the same, trying to keep everyone happy, including myself. Trying to keep up my reputation as 'the life of the party'. Trying to show up, even when I felt so bad, all I wanted was my bed. And little by little, year by year, people stopped inviting me to anything. And, yes, I thought that was what I wanted, but like you, I do feel lonely for the party person I used to be. I miss my laugh! I tried to explain to friends and family this 'thing' I have, these diseases, but no one understands unless they have them. "Hope you feel better" is a response that makes me want to scream!! There is no cure! I will never feel 'better', I can only hope for good days now and then. But being reliable is over, those close to me understand it. Everyone else will have to just have to try and understand it. But living with 6 autoimmune diseases has ripped my reliability to shreds! Good luck to you Leanne, thanks for sharing!!
1. imschmarte Member
 Thanks for the ear Leanne!! It can be over whelming, but the more you get, the less the impact is! LOL Usually the treatment is the same for most of them, a few different pills here and there. My rheumatologist, after the 3rd one, when I told him new symptoms, he would just say, well, you probably have fibro, or Anklyosing Spondylitis, but you are already on the right treatment, so it doesn't matter. LOL And yes, I do get comfort from this website, knowing I am not going through this alone! I wish for you some good days also! Pain free would be heaven!! Thanks again!! Hugs!!
2. maisi Member
 Thank you for your candor and honesty. So much of what you and the Leanne wrote resonates with me. My husband and I were talking yesterday about how much has changed. I'm in the place of either not making any plans (who knows if the effort to fix my hair, paint my face, find tolerable clothing & shoes will pay off or have been a total waste?) or getting excited about the "idea" of plans (i.e., currently there is an Indie Grits Festival - amateur filmmakers from across the country "show their wares&quot😉 and knowing all the while that we won't go. It's hard. I look back and wonder how I ever maintained a very successful private therapy practice, where reliability was a given, a necessity. Now, I feel worn out after a short grocery trip. I do want to find a balance and move out of this place that feels like such "limbo."
maisi Member
I began to despise the negative character trait of "unreliability" during childhood and thus created a life mantra of that I would be "reliable, dependable, and consistent." Compounding the overall burden of PsA, including the unpredictable ups/downs and twists/turns of PsA and my novice level status with pacing, nutrition, exercise, anticipating and treating flares, is the frustration that it is in my best interest to grieve the loss of reliability as I defined it in the past. Creating a new definition will come to light, at some point. At least, that is my hope.
AlisaLavine Member
I could have written this word for word. I've been experiencing this very same issue, including the guilt, for decades. When I get too hard on myself I try to remember all the times I've pushed through the pain to make others happy and how the end result is me in bed for days. Because I spent the past 33 out of 35 years without a formal diagnosis, it seems like now that I have a name for my disease i don't feel so guilty. I also find that people expect less from me. Maybe they did all along and I couldn't see it through all the guilt. I recently had to cancel a trip to the Ozarks with a group of friends that we have been planning since March. My medication simply isn't working. And while I'm disappointed, I'm also relieved. I was really dreading the 5 hour car ride and then needing to keep up with everyone while they went sightseeing. All the meals out, not being in my own bed, adhering to a schedule that doesn't fit my activity level, etc. But yes, I still feel a little guilty! 
1. ClairG Moderator & Contributor
 <inline-mention username="AlisaLavine" user-id="6222588"/> I think you have shared something very important here with us, Thank you for sharing your experience with us. It sounds like you made the right decision to not go on that trip. There are so many things that affect us in so many ways and we have to consider so many factors that could trigger our PSA. Also, what a pain that your medication is not working, have you managed to talk with your doctor about this yet? Have you been on it long? Do you mind if I ask what you are using? -Clair <a href='http://Psoriatic-Arthritis.com' target='_blank'>Psoriatic-Arthritis.com</a> team member
2. AlisaLavine Member
 I've been on leflunomide 10mg for about a year. It worked well for the first 4 months but then a few of my joints started acting up. Because of a miscommunication error with my rheumatologist's MA, I was briefly taken off the medication but restarted it after a two month break in treatment. That was this past April. When I restarted the med it just didn't seem to be as effective as it was before the 2 month break but since it takes up to 4 months to reach peak therapeutic levels, I decided to wait it out. My symptoms continued to worsen and I struggled this summer. I also have Sjogren's which had been under control, meaning not worsening. The symptoms of that disease went absolutely haywire along with my PsA stuff. We tried doubling my dose of leflunomide but I'm extra sensitive to meds and after 5 days of increasing peripheral neuropathy, my rheumatologist had me stop taking it altogether for two weeks and then return to my original dose. We have a plan in place for me to start on Orencia if the leflunomide fails. Because I went undiagnosed for decades, a lot of my old bouts with PsA now look like osteoarthritis, which I have in abundance. So when we do imaging it's really hard to tell what is PsA and what isn't. My rheumatologist wants radiographical evidence in order to put me on the biologic. So I'm not certain what her plan is. I see her in November and in the meantime I've been digging through my MRI radiology reports from the last 10 years trying to find evidence of PsA.(I've had 15 on my back over the past 20 years!) It's all so complicated. A very long answer to your question.😁
rosah Member
I feel like you could be talking about me. Especially around the holidays when I decline invitations because so often I have to back out of things because of the pain. I feel guilty and un-reliable which leads to feeling lonely. 
1. ClairG Moderator & Contributor
 <inline-mention username="rosah" user-id="4247255"/> We relate so well to this, I turn down many invitations over this time of year too. It is important to be gentle with yourself during these times. I have a good understanding with my friends that I will do my best to be there and if I can't, they do not guilt trip me about this. How are you managing with the cooler weather? - Clair ( Team member)
rosah Member
Thanks Clair. The cooler weather is always hard on me. I have fibromyalgia along with PsA and get double flares when it gets cold. It's time to haul out the heating pads. 
1. ClairG Moderator & Contributor
 <inline-mention username="rosah" user-id="4247255"/> you are so welcome, another winter favorite for me, to socialize is a lounge picnic at my house, Everyone brings snacks and drinks and a blanket, and they take all their stuff with them again (I am not stuck needing to clean while in a flare) We Watch movies, or read books and chat in loungewear under blankets, this way I get to see my family and friends, and not feel totally excluded because my PSA is messing with me. Good luck with the cold weather, get the heating pads out, and be kind to yourself. We are here for you - Clair ( Team Member)

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