Acute Disseminated Encephalomyelitis (ADEM) Support Group

Spotlight on our Members: Jane from LivingWithPsoriaticArthritis.org

Spotlight on our Members: Jane from LivingWithPsoriaticArthritis.org

Jane, who lives in Indiana, is one of our Living with Psoriatic Arthritis members, and one of our longtime moderators. She and our other moderators keep the community conversation lively at livingwithpsoriaticarthritis.org. Drop by some time and take a look! Did you know that all of our communities are open to read? But don’t worry: your profile information is available only to your fellow members.

What’s Psoriatic Arthritis anyway? Well, like so many chronic illnesses, it’s an autoimmune condition, kind of like Rheumatoid Arthritis, but with some added “features” such as skin disease and often problems with the spine. Our community has a library of information, and, of course, we’ve got lots of stories and experiences to share, happy and not so.

Jane is in her late forties and a transatlantic transplant from England to Indiana. She’s a dog and cat mom, a full-time employee, and a fan of collegiate women’s basketball. We asked Jane some questions about her disease, about her experiences as a person living with Psoriatic Arthritis, and about being a member of Ben’s Friends.

Spotlight: Thinking back, Jane, what were the first clues that there was something was wrong with you?

I knew something was wrong since I was a teenager. I’ve always had psoriasis (as did my dad, and his dad before him) and I have had difficulties on and off since the age of 12 with soft tissue (particularly tendon) injuries. They were always put down to youthful exuberance or overexertion.

But when I turned 40 (hardly youthful but still exuberant) things really just seemed to bottom out. I had so much difficulty maintaining my physical health, was never injury-free and I could hurt myself badly doing mundane tasks. Exhaustion became a way of life. After countless tests for all kinds of maladies, my GP made an appointment for me with a rheumatologist.

“Tell me about your father,” said the rheumatologist. I double-checked that I hadn’t accidentally walked into the psychiatrist’s office! Telling him about my father’s psoriasis was key to finally getting a diagnosis.

Spotlight: Jane, what would you say has been the most difficult part of having your life touched by a rare disease?

Oh boy, that’s a big question! I guess coming to the realization that your life will not unfold as you had imagined was the hardest lesson. We all know on a cognitive level that we’re not in control of all the intricate pieces that make up our lives. But a chronic disease makes you really feel and know that reality deeply, in physical, emotional, and spiritual ways. Having a rare disease changes everything!

Spotlight: So how do you adjust to a life-changing diagnosis like this? I mean, it really does change everything, doesn’t it?

There’s more than an “adjustment” to a diagnosis. There’s a very real shift in awareness, planning, self-compassion and expectations that a chronic disease exacts on a person. And those shifts are ongoing, time-consuming, humbling and ever-changing. Embracing the changed circumstances of your life takes bravery and honesty, and can be eased by supportive friends and family. Some of my most supportive friends are on our Ben’s Friends website. Mind you, family and friends can also sabotage you quite unwittingly. But that’s a whole other conversation: let’s not go there right now!

Spotlight: Jane, how has having PsA changed your life?

Get me started! I hope I’m not going to sound like a poorly-written self-help book condemned to the overstock shelves at the Dollar General. Honestly, though, having a chronic disease has taught me to have empathy for myself.

I don’t feel sorry for myself, nor do I troll online to find people in worse situations in an attempt to feel better about my lot. I accept my limitations–and often push hard against them. And when I have had a hard day (or week, month, or year!) I know how to ask for help from others, how to treat myself with kindness, and how to take care of myself in a nurturing (not self-indulgent) way.

To be honest, I feel more capable than ever because I live a fulfilling life, work a demanding 40+ hour a week job, have a rewarding personal life, and yet I can still find time to have a chronic illness. I’m not saying it’s easy, but it’s not all bad.

Spotlight: So how did you discover Ben’s Friends?

Like almost every other rare disorder patient I’ve met, I immediately went online and started Googling! It wasn’t long before I found Ben’s Friends. Sometimes I wonder how people coped with a diagnosis like this before there was the internet. It must have been a miserably lonely place to find yourself!

Spotlight: How has being a member of a Ben’s Friends community made a difference to you?

Like a lot of our members, I arrived feeling totally alone and desperate about my illness. But since joining, I’ve never felt alone or desperate again. The more I participated, the stronger the feeling of supporting each other became. I have felt uplifted, comforted and befriended by the LWPsA community.

And we’ve also shared a few good laughs together! But seriously, if I have a question or concern (no matter how weird it may sound) someone will answer in a kind, polite and supportive way. Oh, and sometimes there’s a firm but kind response, kind of like give-your-head-a-shake too. But that’s good – sometimes that’s just what we need! Whatever it is, the support I get from the other members helps me re-calibrate and get back on track. I hope the support I give to others helps them too. (Ed: it sure does, Jane!)

Spotlight: Having a rare disease isn’t funny, but do you have a disease story that will make people smile?

Isn’t that the truth! You’re right, PsA is no joke: it causes inflammation in the small and large joints of the body, and it can also attack other parts of the body too. But sure, there can be a funny side!

I was on my way to the rheumatologist one morning after Easter. All my friends know about my Cadbury Mini Eggs addiction: come spring, I lose track of how many bags I’ve consumed. That morning I’d had a hard time dressing: I could not get any of my work pants over my hips. Anyway, I struggled and tugged at my trousers (while muttering nasty things about the Easter bunny) and I tried on several pairs before settling for a very accommodating pair with a lot of stretch and give. I confessed to my rheumatologist that I must have packed on the pounds with all the chocolate I had eaten. He rather gently reminded me that I was, actually, experiencing considerable inflammation and swelling due to my PsA, especially in my hip joints. And they hurt like you-know-what. Well, that was the best news I’d had all day, even though it was still early. I took this as a sign to buy more mini eggs on the way to work! I’m a firm believer in the therapeutic powers of chocolate.

Spotlight: So have you got anything else you’d like to say or tell us about, Jane?

This community was a life-saver to me and to my partner. Understanding my disease better and the ways in which Psoriatic Arthritis imposes itself on all areas of my life has helped me to be more compassionate to myself and has helped me better explain myself, my fears, and my challenges to my partner.

Thank you to Ben’s Friends for giving all of us who might otherwise suffer alone or in silence a place to gain strength and find solace. And I guess I should thank Ben himself for starting this network! I understand he’s had some big challenges of his own.

(Ed: He certainly has. You can read Ben’s story at http://www.bensfriends.org/history/ .)