The Challenge of Living with Multiple Rare Diseases

According to a story from pharmaphorum.com, Jim Kuhn had a successful career in business for over 30 years, but everything changed a decade ago when he was first diagnosed with Sjögren’s syndrome. Since then, new diagnoses have piled on, including psoriatic arthritis, CREST syndrome, rheumatoid arthritis, and, most recently, sarcoidosis. The heap of autoimmune diseases and the side effects of the medicines needed to treat them have left Jim effectively disabled. After living an active life, such changes haven’t been easy.

A Daily Struggle

Even with treatment, which at times has involved taking 30 different pills every day, Jim experiences severe fatigue, problems with cognition, mobility issues, and chronic pain. With all of these difficulties, Jim often requires days of rest before he can muster the energy to accomplish a basic task like buying groceries. These limitations mean that Jim has had to give up a lot of the activities that he used to enjoy and misses out on time with friends and family. 

Invisible Illness

Unfortunately, Jim’s healthy companions often fail to understand why he has to bail on plans, even if they were made recently. The entire situation is worsened by the fact that you can’t really tell that Jim is sick just by looking at him; many of Jim’s friends tell him that he “looks great,” but deep down, these comments make living with a list of invisible rare diseases all the more painful.

Mental Health

Mental health challenges are bound to appear with the array of constant symptoms that Jim deals with. Over 50 percent of people who live with chronic illnesses also have serious mental disorders. About four years into his diagnosis, Jim was plunged into depression as he faced the reality that he wasn’t going to get any better. Later, he even attempted to take his own life.

“It finally struck me that I was not going to get ‘better,’ and it was crushing to my spirit.” – Jim

Thankfully, Jim has been receiving therapy to help deal with his mental struggles. Though things have been tough, Jim says that his experiences have helped him develop a new level of inner strength and acceptance. 

 “I realised that I still had a life, I still had a box, albeit much smaller, constrained by my illness. I have learned that I needed to ‘fill my box’ with those things that were meaningful to me.”

Today, Jim can honestly say that he remains happy despite everything. Now he also works as an advocate with the Foundation for Sarcoidosis Research, which has helped him discover a new purpose in his life.

Learn more about this organization here.

 


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