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Invisible Disabilities Association

Invisible disabilities support group and discussion community

Inspire has 1,309,897 Members, 6,173 of whom are part of this community.

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Connect with others affected by invisible disabilities to get support and advice. Share stories of diagnosis, treatment, management, and more.


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Invisible Disabilities Association

What’s the story of your rare disease diagnosis?

Brian's journal

Brian

whats-the-story-of-your-rare-disease-diagnosis-1

200249

Dear members, Today, more than 200,000 Inspire members have a rare condition. You have made Inspire a place to share your experiences with others who understand what you’re going through and help others at the same time. Many of you have described how long it took for you to receive an accurate diagnosis for your rare condition, while some of you found your diagnosis quickly. If you’d ... Read More

Invisible Disabilities Association

Anyone Know This Rash?

Fireflies_Are_Magic's journal

Fireflies_Are_Magic

anyone-know-this-rash

200249

I've been getting this rash over the past week--it got really painful for a few days before I even realized it was there so it's probably more like 2 1/2 wks old now. > The rash doesn't itch at all--it just burns like shingles does but it's not shingles. Touching it stings a little, but otherwise it's just a constant burn that gets intense when I kneel or bend down. The worst pain ... Read More

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Invisible Disabilities Association

Patients and caregivers are “Experts by Experience”

Brian's journal

Brian

patients-and-caregivers-are-experts-by-experience

200249

Dear members, Today we are excited to announce that Inspire and Mayo Clinic have launched “Experts by Experience” – a series of columns written by patients and caregivers from around the world. The kickoff column is Kindness at the Margins for Caregivers, by patient advocate Renata Louwers. A main purpose of the series is to bring the patient perspective to people who can learn from ... Read More

Invisible Disabilities Association

How do you make medical decisions?

Brian's journal

Brian

how-do-you-make-medical-decisions

200249

Dear members, As patients and caregivers, we have more sources of medical information available to us than ever before to help us make the best decisions possible for our health. Advice from our doctors is sometimes not the same as the information we learn from the experiences of our peers, and there are often other sources of information available as well. Some of our decisions feel ... Read More

Invisible Disabilities Association

To fight for opioid therapy, an Inspire member calls for action

Chronic-Inspire's journal

Chronic-Inspire

to-fight-for-opioid-therapy-an-inspire-member-calls-for-action

200249

By Radha_Inspire Digital Editor, Inspire “I think it is time to organize ourselves into a lobbying group somehow.” Constance Small (acorns02459) wrote that on October 19th on Inspire as part of a conversation about what happens when it becomes difficult or impossible to get opioids to treat chronic pain. “I would be very happy to join anyone who would like to organize a campaign to ... Read More

Invisible Disabilities Association

Fighting the long-term loneliness of chronic illness

Chronic-Inspire's journal

Chronic-Inspire

fighting-the-long-term-loneliness-of-chronic-illness

200249

In a recent piece for Healthyway, Jenny Lelwica Buttaccio described her slow descent into what was later diagnosed as Lyme disease. Her condition led to gradual isolation from many of her social and family relationships. “At the time of my diagnosis, I’d been bedridden for nearly two years,” Buttaccio said. “The prolonged period of social separation was undoubtedly the darkest time ... Read More

Invisible Disabilities Association

ER and my dog bit me

Gamecockgirl97's journal

Gamecockgirl97

er-and-my-dog-bit-me

200249

My dog Cappy is very intuitive. He can tell when my blood pressure drops and barks to alert my parents. Well, I was asleep and didn't know and apparently he wasn't able to alert me any other way so he bit my ear. It hurt bad and I thought I had an ear infection and since we were in Florence getting the dogs groomed we went to Florence Urgent Care. They checked my blood pressure, which ... Read More

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Invisible Disabilities Association

New Lyme Light here

In: Introduce Yourself

sonadora1

new-lyme-light-here

200249

Hi, Everyone I am new to this community. I am so glad I found it. I am recovering from Lyme disease, and realized since I am disabled that I have lived with a lot of shame about my illness and the fact that due to it being misdiagnosed for years, I got so sick I indeed had to file for disability at the time thinking I was bipolar and had fibromyalgia. I have recovered a lot since the ... Read More

Invisible Disabilities Association

Chronic pain as an invisible condition

In: Introduce Yourself

OhioGirl42986

chronic-pain-as-an-invisible-condition

200249

I am a chronic pain patient and I believe chronic pain is an invisible disorder because we can look perfectly good on the outside and be totally messed up on the inside which is what is happening to me with my back and neck! I don't let people see me in pain so people think I am perfectly fine when that is not the case ... Read More

Invisible Disabilities Association

Dentist, Sick Days, Eating Stuff I Shouldn't, and Hope

Gamecockgirl97's journal

Gamecockgirl97

dentist-sick-days-eating-stuff-i-shouldnt-and-hope

200249

So I've been nervous about going to the dentist. I didn't go for a year and a half because I just knew he was going to tell me I needed to get all my teeth pulled. But I actually had pretty good news. He didn't tell me that my enamel was horrible and I only had one cavity (this is big-many in my gastroparesis groups have been put in dentures even in their twenties due to the nausea ... Read More

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