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What do you wish your family understood about your condition?

I spent years watching and helping my mother through her condition, so while I understand it, many others don't have the same support and understanding from their family.

What do you wish your family understood about your condition? I'd love to hear your responses!

  1. This is a hot topic - I'm surprised there are no replies ! I wish they understood I'm not who I used to be but I'm still who I used to be. I want to do what I used to but can't but I'm still in here. It's also really hard for people to understand the unpredictability of this disease - you never know how you're going to wake up, what you can do in a day and you need rest. I am still very active but just because I go for a bike ride one day doesn't mean I'm "better"...just darn stubborn.

    The biggest thing - I am in pain ALL the time - it's just a matter of how much. When I go for that bike ride or whatever it's because I know activity helps and I'm trying, and doing what I love. People generally don't get constant pain - you take a pill & fix it right, or get over an "injury" over time ? Not for us - I don't really remember what it's like to not be in pain.

    Sometimes we can push that pain down and sometimes it seems like it consumes us - that I hate, sometimes I'm social and sometimes I just want to be left alone.

    1. I can echo every sentiment in your reply and all the others . I find it hard to put into words … I want my family to know just how hard I’m trying . That what I am doing might not be much anymore, but I’m pulling out all the stops. I fear that they do not get it .
      I went through a lot of other conditions & was not diagnosed for years and I felt no one really believed me or thought I was having mental problems - and in time you do have mental problems because of all you have been through. Then I totally fell apart and became very seriously ill and I ended up in a life or death situation. I suddenly went from no one really believing me to everyone hopping to and trying to do every medical test and sending me to every specialist and handling me with kid gloves . I think I almost became famous and I go to a busy university teaching hospital where they see the weird and the crazy and I definitely apply .
      I want my kids to remember me as a cool mom who did everything she could for them and not only remember me lying in the recliner every time they come in the door . I fear my daughter only knows “sick me. “ My husband became both parents after awhile and they finally stopped coming to me for anything . High dose steroids finished them off with me for quite some time and I eventually had to win back their trust . It just seemed so unfair to me that not only do I look about 25 years older than I am , my hair is thin, my skin ruined from steroids , my feet are two misshapen blobs that defy any other description ; I can only think of a name or subject I was discussing about two days a week without forgetting ; I have no sex appeal ; and I had to quit my career only to sit home alone and then I have to feel like I just not enough anymore for this world . I feel invisible pretty much all the time . I didn’t get to finish the things I wanted to do .
      However , that is the bitter, sad side of me that appears from time and time and I know that is just not good for me to focus on those things anymore . I can’t fix that …it’s in the past .
      I think God just has something else for me that I can’t see or understand yet . I have to focus on Jesus or I start worrying and feeling sorry for myself or trying to control and fix everything . Those things almost sent me over the edge .
      Our children have had to face some adversity in life because of us, maybe. . But life is that way. It may make them more compassionate people .
      I found that God gave me what I needed when I was in need for one thing or another . It wasnt always what I WANTED , but it was all I needed. Every family member didn’t appear to help when I wanted them to , but someone did . I didn’t get to go back to work , but somehow (I still don’t understand ) we made it . I didn’t get my career back , but I discovered painting again and I just started volunteering at the library . And the list goes on and on .
      I have rambled way too long . I guess , too, it hurts my pride for others to see me in any way other than my top speed . I have felt a lot of empathy with elderly people since I have had this diagnosis . I have so much in common with them these days !

    2. You are amazing. It takes courage and strength @Riding My Broom to do what you just did. You telling your story! It is only when we share with others our struggles that each of us start not to feel so alone. My children saw my struggles with this disease as well. In the long run it did make them more compassionate men. I believe it will be the same with your children. Hopefully you are on a treatment that is working for you so that you have some relief. We are here for you always. Never forget that. Vickie W., Team Member

  2. I just quit Otezla after almost three months (called my rheumy this week as I was almost out & didn't want to order more) and constant nasty side effects - gave it a good try but actually feel better off of it. Lost weight, GI issues, headaches...ugh...Next rheumie appointment this week so hopefully something more effective will be offered. I have tried MTX, sulfasalazine, & Plaquenil. Prednisone helps but not something that I want long term.

    1. Yes, I'm hopeful. Tried a Humira biosimilar for six months, now just finishing Cosentyx loading doses and hoping it works.

    2. Hi . I hope Cosentyx is effective and that you don't experience side effects. Keep us posted if you feel comfortable doing so. Thinking of you. - Lori (Team Member)

  3. Riding my broom, I could relate to you feeling invisible. I feel that way sometimes. I have had this arthritis "gig" for some time. Some days I feel like my now adult children are very weary of it. I spent this Christmas in a lot of pain, much more than normal. I didn't say a word to either of my kids when they called (due to Covid and work schedules neither kid was able to visit for Christmas).
    I just dried up a few tears and pasted a smile in my voice.
    How do we talk with people close to us about our pain? I would never want it to be center stage in our conversations but it is real and impacts me every single day.

    1. Hi @Mary Lynn, I can hear how difficult this is for you. It is so hard when family and friends do not understand. I am sending you an article that many members of our community have shared with their families. If you think it would be useful, please share with yours. Sending you a very gentle hug. Jill, Team Member

  4. Thank you, Jill! It's a great article and I could relate to it. It occurred to me tonight that guilt gets in there for me...I sometimes feel guilty for having a chronic illness. I don't doubt that my children love me. But I feel as if I have let them down. I know that's not true but guilt can be mighty powerful. So I hide how I'm feeling or "fake it til I make it"! I need to stop fearing the honest conversations when my arthritis is particularly active and painful.

    1. Hi @Mary Lynn, I am glad you liked the article. I can understand what you are saying about guilt. Guilt is such a strong emotion, one that is really hard to overcome. Please remember it is not your fault that you have psoriatic arthritis. We understand how you are feeling and we welcome you to share or vent when ever you need. I am sending you an article from one of our advocates about her experience with guilt, I hope this can help you. Jill, Team Member

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