The life-changing burden of my rare disease

I was first diagnosed with a rare autoimmune disease, Sjogren’s Syndrome, about ten years ago, after several years of medical struggles and misdiagnosis. Over the next few years, additional autoimmune disorders were added to my chart, such as rheumatoid arthritis, psoriatic arthritis, CREST Syndrome, and others.

Then, about five years ago, I received a diagnosis of Sarcoidosis, after initially being diagnosed with Lymphoma, which has since spread from my lungs and lymph nodes to my skin, eyes, and neural network. Over the years, these illnesses, along with their treatments, have caused many changes to my life and lifestyle.

I have now become 100% disabled from my illnesses and associated complications. The verdict came after fighting to maintain a ‘normal’ lifestyle for several years. My illness causes chronic pain, chronic fatigue, mobility, and cognitive difficulties. Now, even simple tasks become difficult.

We have a joke in my ‘circle’ of rare-disease co-sufferers – ‘I got up, showered, and got dressed… but not all in the same day.’ Some days, even bathing is a challenge, much less daily typical activities like home maintenance, gardening, cooking, and other activities I liked to do. Now, I have to save up the energy for a few days just to go on a grocery shopping trip of only an hour. Naps have become my best friend!

Every day I get up, I have to assess how I am doing and make any necessary adjustments to my planned schedule. As a result, I have had to give up a lot of activities that I used to enjoy and I miss a lot of time with family and friends. Many do not understand why I can’t keep my plans, even ones we made a day before. This causes further isolation and loneliness with me and other chronic illness patients.

When I do get together with ‘outsiders’ – those that do not truly understand the chronic illness life – most of them say, ‘You look great.’ They don’t understand that I could be in a lot of pain inside despite looing okay on the outside. Every time I hear it, I feel another stab in my psyche, and it makes it harder to live with an ‘invisible’ illness. As such, as time goes by, I have narrowed my social circle quite a bit to those that understand and accept my challenges, and yet are still willing to be a part of my life.

I have had many different types of treatments, from prescription drugs (often up to 30 pills a day) to monthly infusion therapy – often with chemo/biologic meds. Each different treatment protocol comes with its own side effects to manage.

The key for me is to balance the most effective treatment with the least impact of side effects, which is always challenging. However, most physically challenging for me is that I do not know what kind of day I will have until I get up in the morning, which causes all kinds of problems.

Mental changes

Living with a chronic illness, especially one for which there is no cure, can bring on many mental disorders, including depression, PTSD, anxiety, among others.

The loneliness and constant reminders of your ever-present condition – pain, fatigue, treatments – become very degrading, both, physically and mentally.

Recent studies show that more than 50% of chronic illness sufferers also have some type of serious mental disorder.

Personally, I found I was struggling with major depression about four years into my rare disease journey. It finally struck me that I was not going to get ‘better,’ and it was crushing to my spirit.

From there, it seemed everything else came crumbling down and my will to live was at an all-time low. I spent about six months isolated and basically moving from bed to couch and back to bed again. Fortunately, I recognised that I was having a problem and now receiving therapy to handle my mental condition while I continue to seek new treatments for my physical disorders.

Three years ago, I had to give up my full-time job, as I was not able to perform at an acceptable level, and absenteeism due to fatigue, pain, and doctor visits. I even tried to go to part-time status, but after three months found that to be even too difficult. I had been a successful global business leader for 30+ years before accepting a calling into full-time ministry for five years. It was especially difficult to leave a vocation that you love and leave behind a ministry that had become such a large part of my life.

I am a survivor

Despite the clear and significant life changes brought on by my rare and chronic illness, I have also learned many valuable lessons and adaptations needed to live a meaningful life despite my diseases.

These diseases have attacked me for 10+ years, and they tried to take my life two years ago. I spent a week in the ICU and 30 days in the hospital total, but I am still here. No matter what each diagnosis (or treatment) has thrown me, I have overcome it.

In the sarcoidosis community, we call ourselves ‘warriors,’ as we have to fight every day. We have to fight our illnesses; we have to fight mental struggles; we have to fight to get doctors to understand us and our symptoms; we have to get the pharmaceutical industry to develop rare disease drugs; and we have to fight insurance companies for the benefits we need for proper treatment, although often extremely expensive.

I have developed inner strength to withstand these constant battles, and with each fight, I become a better warrior. I wish I didn’t need to fight, but at least I have the confidence to know I can withstand even the toughest battle and survive.

I had a rich, full life before the onset of all my rare and chronic illnesses. At first, it felt like I had ‘lost’ everything to the diseases, as I was unable to do most of the things I used to do pre-illness, when my life was a ‘big box.’

However, with great counseling, I realised that I still had a life, a 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.

Sure, many things were outside my box – outside my control – like my health, my calendar, and my day-to-day strength. However, viewing life from ‘inside the box,’ my wife and I started filling my box with little things I enjoyed.

We would take short drives in the country (less than an hour, as I would grow weary) to view wildflowers and animals. We began to notice the little things in life I enjoyed and counted those as ‘wins’ in the box.

While my life and lifestyle is certainly changed, and honestly reduced, because of my chronic illnesses, I can truly say that I am fulfilled and happy with life in my box.

I am an advocate

Because I have spent so much time as a rare/chronic disease patient, I have learned how to live with these debilitating illnesses. Last year, I was given an opportunity to become a volunteer Patient Advocate for the Foundation for Sarcoidosis Research (FSR) – the leading non-profit organisation working to inform and empower patients and to researching a cure for this disease.

In this role, I work closely with FSR to empower and support sarcoidosis patients, advocate locally & nationally to increase awareness of this disease, and help with fundraising locally to find a cure.

The position allows me to do activities when I am able, rather than on a set schedule, which fits in well with my current abilities.

I also get a chance to share my story – the good, the bad, and the ugly – and interact with other sarcoidosis patients. I get to help with locating doctors and providing information to patients (and doctors) about sarcoidosis and how to ‘live’ with this rare disease. This role and its associated functions have really given my life a purpose.

I am a counselor

No one understands what it is like to live with a chronic illness except those who have to live every day this way. Recently, because of my advocacy work with FSR, I was asked to help monitor the sarcoidosis community of an online health and wellness support website. On those days that I can only manage to just get up and sit in the recliner, I can still logon and help other sufferers navigate the complex world of sarcoidosis. I like to work with newly diagnosed patients, providing them with tools and support, but mostly by letting them know that they are not alone in their health journey.

I really find that when I help others with their health-related challenges, it helps with my own self-advocacy and self-care. Whatever I share with them is just what I need to hear myself. I find this work very fulfilling and definitely helps ‘fill my box,’ especially on those days that I think I cannot really accomplish much. Being part of a community, even though we are joined only by our nasty diseases, gives me comfort and hope.

There is no doubt that my chronic and rare illnesses, along with the related symptoms and outcomes, have caused significant changes in my life and in my lifestyle. However, despite my everyday challenges, not all these changes have resulted in a negative outcome, nor have they permanently damaged my life.

Yes, my lifestyle has been reduced, and my lifespan has been shortened, but I have achieved strength, perseverance, and a sense of peace that would not have been possible without experiencing the last ten years with rare and chronic illnesses. I have found a way to fight, to overcome, and to achieve a meaningful life, despite my life changes. I am a warrior!

About the author

Jim Kuhn was diagnosed with sarcoidosis – an inflammatory disease characterised by the formation of granulomas (groups of inflamed cells) in any organ of the body – in 2014. Along with sarcoidosis, he also suffers with five other autoimmune disorders, including Sjogrens Syndrome & rheumatoid arthritis.

Before sarcoidosis, he spent 30+ years as a successful global business leader, finishing his last five years as a full-time missionary. Jim is a volunteer Patient Advocate for the Foundation for Sarcoidosis Research – the nation’s leading nonprofit organisation dedicated to finding a cure for this disease and to improving care for sarcoidosis patients. As an advocate, Jim helps others with this disease to locate knowledgeable healthcare providers and gives tips to understand and live with this rare disease. Jim is also an accomplished speaker and frequent blog writer about his life with sarcoidosis.

Patient Insights is a monthly series that appears in partnership with Inspire, a company with an online support community of more than 2 million patients and caregivers worldwide.