Does anyone else have a family that doesn't get their condition?

Hi . I wish your family members were more compassionate and understanding. You are not alone in dealing with these issues. Many people with PsA face the same problems with family members, friends and coworkers, and I am sure you will hear from some of them here. Some people just can't comprehend pain they can't see. The variable nature of PsA makes it hard for people to relate as well -- this whole idea that you might be capable one day and bed-ridden the next. Have you tried sharing any of our articles with them or bringing them with you to one of your appointments? I am glad you are moving into a home that offers assisted living. You are likely to be less stress if help is just an emergency pull away. I hope your family eventually comes around. For now, please know we are here for you when you need support or a safe place to vent. Sending lots of gentle hugs your way. - Lori (Team Member)

I have lost so much muscle tone and even ability to wear shoes in the last few years, it is surreal. No one understands. Every single day takes all I have to make it through. I was always active, athletic, and toned, but this has sucked the life out of me. I had a break-through flare in my left leg, ankle and foot that I saw so many doctors and specialist and had so many tests, yet no one could tell me what was going on. My rheumatologist told me I had a break through flare and after several shots of corticoid steroids in my ankle and foot and venous ablation, the swelling became under control, but I now think I have nerve damage as my foot, ankle and lower leg goes dumb.

hey there. My mother is the worst, she is of the generation that has the just get on with it motto. Unfortunately even though I have explained my PSA, it’s symptoms, what a flare is, etc she still doesn’t understand. She can’t work out why a lot of days I just can’t do anything. I used to be the energiser bunny 🐰 on speed, really active, exercise was extremely important to me I was either running cycling or swimming. After a review bad ankle sprain which tore all my lateral ligaments and tendons on my foot and syndesmosis it went on to have an undiagnosed fibula fracture which didn’t heal so 5 months after the injury o had to have a plate put on it with bone graft to fill the 1.5” gap. I then developed CRPS - complex regional pain syndrome which I wouldn’t wish on my worst enemy, I had further surgery in July this year to remove the plate and decompress the main nerve that supplies the top of the foot from 8cm of tight constrictive scar tissue it was so badly compressed that we don’t know what function I will eventually end up with. CRPS flares like my PSA amd often with it, usually from stress or not eating properly. This year o have also had to have a semi emergency stent into a brain aneurysm to stop it rupturing, had to have right ovary removed as my endometriosis had come back and my ureter was be partly blocked by the endo in the ovary. It’s been a challenging 2 years I have had to stop working I’m a clinical nurse specialist in plastic and reconstructive surgery assisting my surgeon with the operations including suturing. As my job involves standing for very long shifts (we work until the list is finished) 10-14 hours. I can’t stand to do the ironing for longer than 20 minutes so I had to resign from my dream job.
Mum can’t understand why it’s taking so long for me to get better and it’s hard as my progress has been hampered by everything else including my chronic migraines. I have set up a home gym amd just need to have my husband put up my pulley low resistance weight training system and move some furniture then I’m good to go.
Sometimes despite the best explanation family and friends don’t understand I have stopped being invited to things as I often have to cancel on the day if I’m really feeling crappy and now they don’t call, text or call in to the house for a chat. It’s a lonely place sometimes and the support groups o belong to on line are my social connection with other women and men has really really helped me feel not so alone