The Grief and Relief of Being Diagnosed With Sarcoidosis
It seems there’s a commemorative day for just about everything. Today alone apparently is the Gold Cup Parade, National Chocolate Pecan Pie Day (I’m all for that), National Radio Day, and World Mosquito Day (no thanks).
I recently learned that Aug. 30 is National Grief Awareness Day, which according to National Today is “dedicated to raising awareness of the myriad ways in which individuals cope with loss,” which for me takes on a whole new meaning.
Usually, when we hear the words “grief” and “loss,” we think of losing a loved one. We mourn their passing and think of all the ways life will never be the same without them. For people with chronic illnesses like sarcoidosis, there’s a different kind of grief. We mourn the loss of our healthy selves and know our lives will never be the same.
First are the physical changes. We gain weight or have visible manifestations of cutaneous sarcoidosis, so we don’t look like ourselves anymore. We have chronic pain, fatigue, or difficulty breathing, so we don’t feel like ourselves anymore.
From left, Kerry, before and after treatment for sarcoidosis in 2010 and 2019. (Courtesy of Kerry Wong)
Symptoms leave us unable to do things we did when we were healthy. Walking, running, and other physical activity may no longer be possible if sarcoidosis affects our joints, heart, or lungs. (About 90% of patients have pulmonary sarcoidosis.) Working, socializing, and traveling present challenges due to fatigue and the unpredictability of our symptoms.
We see friends, family, and former co-workers go on with their lives, and we are left behind. We know the healthy person we used to be would have jumped at the chance to hike that nature trail, climb that rock wall, or attend that paint and sip class, but she’s gone now, and we miss her.
I miss her.
I miss me.
But thinking about all of this also reminded me of something I saw on Instagram not too long ago, posted by @ipf_raremark. It was just text, a dictionary-style definition for a new but fitting word:
Grelief:
– NOUN
The feeling you could get after a rare disease diagnosis.
When grief and relief collide.
I know, it doesn’t sound like relief is something anyone would feel when diagnosed with sarcoidosis. It’s a rare disease that most people have never heard of, it can affect any organ or system in the body, and it has no cure and few moderately effective treatments. It is not good news.
But it’s not like it’s coming out of nowhere. We didn’t go for a wellness checkup and find out that there was a problem. We felt something was wrong and went to the doctor to find out what. In reality, most of us have gone to a lot of doctors to find out what was wrong. We’ve spent weeks, months, and years trying.
I’ve lost count of how many doctors I’ve seen, and it took eight years from when I visited my first one until I was diagnosed with sarcoidosis. For the first four years, I was told time after time that there was nothing wrong — I looked fine, so I was probably just depressed. Then I developed more visible symptoms, including swollen feet and ankles and skin rashes, and I spent the next four years with rotating misdiagnoses and treatments that didn’t work.
By the time my doctors — a rheumatologist, dermatologist, and pulmonologist — figured out that it was sarcoidosis, based on symptoms, bloodwork, a chest X-ray, and a skin biopsy, I had been through the wringer. I was exhausted. I was frustrated. I was desperate.
So, when I finally had a real answer, even though it was not a good answer, it was validation after being doubted, denied, and dismissed for so long. It gave me a better understanding of what was going on in my body. It gave me peace of mind. It was, in reality, a relief.
With an accurate diagnosis, we were able to determine a path forward. We started new treatments that led to better results and fewer side effects. My symptoms eased up — not completely, but there was significant improvement in my health. Even as new symptoms developed in the time since then, we’ve had this important piece of information to work from.
But the best thing about getting diagnosed with sarcoidosis is the sarcoidosis community. I jumped right into the deep end, joining Facebook groups, attending live events, and volunteering with sarcoidosis organizations. I started a support group, hosted walkathons, and traveled the country sharing my experience. I even started my own organization with three others in my sarcoidosis family.
Sarcoidosis Warriors put their hands together at K.I.S.S. Westchester Sarcoidosis Walk ‘n’ Roll, 2019. Clockwise from left, Kerry, Maria Mays, Terese O’Reilly, Cheryl Bradford, LaCea Stewart-Roman, Cavell Duckett, and Hanna Curtis. (Courtesy of Kerry Wong)
That’s who they are now: my family. I’ve connected with dozens in person through trainings, events, and conferences, and hundreds more whom I have technically never met. But we share this connection, this bond, this experience that no one else can truly understand, and I couldn’t get through this sarcoidosis life without them.
***
Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sarcoidosis.
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Comments
LAURICE MARTIN
Great article Kerry. I have just had my diagnosis finally confirmed after some years of wondering. I like the word Grelief and the feeling is so true.
My GP diagnosed my condition several years ago and when she left her general practice to specialise in skin cancer I was on my own. I saw a respiratory specialist who wasn't prepared to call it sarcoidosis, only a maybe.
It took a life-threatening Saddle Pulmonary Embolism in January 2021 to make another doctor insist on a PETSCAN six months later.
🦋 Kerry Wong
Thanks, Laurice. It's amazing how much of a difference it makes when you have the right doctor. It shouldn't be so hard to get the proper testing, diagnosis, & treatment. I hate that you've had to go through so much, but glad you've finally got the "grelief" of an answer. I hope that brings you to a treatment plan that eases your symptoms, too.
~🦋
Vivian Stoner
I was diagnosis with sarcoidosis since 2011, some years have been better than others. I had covid-19 in December and was in ICU for eight days and in covid unit for five days. Since then my breathing has been very bad. I stay on oxygen four units all the times. Is there anything I can do to get my breathing better?
🦋 Kerry Wong
Oh Vivian, I'm so sorry you've had to go through so much with COVID, and I know quite a few Sarcoidosis Warriors who have continued to feel the effects long after they had it. I don't really have medical advice (not a doctor), but I would definitely reach out to my pulmonologist, and perhaps ask about respiratory therapy. I hope that helps!
~🦋
Susan
I have sarcoidosis, retired nurse and mindfulness/meditation instructor and FSR patient advocate and navigator
How can I wrote an article for sarcoidosis news?
Tx
Susan
🦋 Kerry Wong
Hi Susan! (I'm an advocate/peer mentor with FSR, too!) It's always great to see people using their experience to help others with sarc. I've passed you're email on to our HR, so they'll reach out to you when a position is available.
~🦋
Amy Jennings
Wonderful article. I feel exactly the same way. Thanks for taking the time to let others know we are not alone.
🦋 Kerry Wong
Thank you, Amy. So many of us feel so isolated when we have this rare disease that no one's heard of ... and though we all may experience sarcoidosis symptoms differently, so much of our experience is the same. The more we share our stories, the more we'll find others with stories just like ours ... and the more we'll know we're not alone in this.
~🦋
Sheila Brosnan
Hi Kerry, so awful it took 8 years to get a diagnosis. I’m now 73 and in recovery some 38 years. Still suffering the side effects of medication. I was diagnosed accidentally. Had been to my GP and he treated me for depression. It was a long road to recovery after that. So glad I found this site. I live in Ireland and only ever met another sufferer and she had it on her skin. Mine was pulmonary. Keep up the good work. Sheila
🦋 Kerry Wong
Wow, Sheila - that is a long time. It's amazing how some of us can search for answers for years, while others find answers to questions they haven't even asked. I'm glad you've found us here!
~🦋
D.A.S.
I read that marriage is attending the funeral of a spouse--as they evolve and change--again and again. I think it could be more positively phrased as attending the births of the spouse as they evolve and change. I think the mourning of old selves lost to--and the joy of discovering selves inside of--chronic illness is like that.
🦋 Kerry Wong
Wow ... I definitely prefer the idea of rebirth (or growing/evolving together), but yes, there are surely joys and sorrows, and we've got to allow for - and acknowledge both.
~🦋
Elmer F. Brisbois II, MBA
What a worthwhile post, I have been with sarcoidosis since 1990 though it did not become active until 2012 and then went undiagnosed till 2016 when I had a series of events that led to a splenectomy and the diagnosis of Sarcoidosis. I am a multi system active sarcoidosis, in my lungs, spinal column, and brain. The fatigue tries to control my day but I step out every morning at 0800 for a 5 mile walk ya it takes 1.5 hr to do but then I can at least say I did something. My wife does not understand the illness and so little support, she just sees me as lazy and a statue. I am finally off of prednisone and onto a anti-steroid sparing medication that has so far helped manage my immune system. have dropped from 25 meds down to 5 meds a day. weight loss of 25 pounds in the las 3 months so am finally getting to my optimal weight. I am medically retired and it was tough having SSA-Disability services recognize that I am broken. Life with Sarcoid is tough on good days on bad days it is a struggle to motivate oneself to get out of the house. I am my own advocate and each time that my sarcoid moves into a new system then I research the affects of sarcoid in that organ so that I can help my medical team treat the new signs/symptoms. Thank you
🦋 Kerry Wong
Aww, Elmer, it is definitely harder when those closest to us don't understand ... and all we can do is try to educate them, try to connect them to others living with or caring for someone with sarcoidosis - that may make it more real for them, and in turn, make them more empathetic to your true experience. Disability is definitely difficult (it took me 2 years to appeal my first denial, then I had to appeal after I was denied again upon review 3 years later) - but it's so important to be able to advocate for yourself - for SSD, with your doctors, and pretty much all other aspects of life. Wishing you strength as you move through it all.
~🦋
Karen Wildenfels
I enjoyed your article. While compared to some who have been diagnosed with pulmonary sarcoidosis, my symptoms are very small, however, even light symptoms are depressing. I am now a year off prednisone, but I am still on methotrexate but trying to wean off. Hopefully soon, my status will be off meds and in remission (not sure if that is the correct terminology). My main issue right now is that my feet hurt all the time. I have been to an orthopedist, a rheumatologist and a podiatrist. I was told by my rheumatologist that I do not have sarcoidosis arthritis, but the timing of the pain and discomfort is too coincidental -- right after getting off of prednisone. Has anyone had that issue?
🦋 Kerry Wong
I'm so glad you liked it, Karen. While it's so easy (almost natural) to compare ourselves to others, it is one thing that is never helpful. There will always be someone who has it "worse," and someone else who has it "better." But regardless of anyone else, your experience - and your feelings about it - are valid. Always remember that! Hope you're able to find some relief for your foot (see Alan's response, below).
~🦋
Alan Bart Cameron MD
I have recently retired after 50+ years as a practicing physician. I am likely the third generation to suffer from Sarcoid. My mother had great problems with sero-negative Rheumatoid Arthritis when I was a child. Most of her issues were hands and feet, so she took aspirin until her ears rang and backed off. Her disease did go into a remission for several years, until it returned as a renal disease diagnosed with lupus, and then later with giant cell arteritis after temporal artery a biopsy--- all responding to steroid therapy. In later life she was diagnosed with psoriatic arthritis again responding to steroids. Despite a bout of erythema nodosum at age 10 (1925) which left her bed ridden for months, and insulin dependence in response to steroids for 50 years, she was her high school Valedictorian - Phi Beta Kappa 3 year Magna Cum Laud in college, with a long professional career and several advanced degrees- she managed her health issues and lived to 97 still totally independent and active. In hindsight, it is clear that she had an autoimmune disorder affecting joints, and multiple systems, including lungs for 87 years without definitive diagnosis - steroid responsive, which I call Sarcoidosis.
My brother is an architect - who never smoked but was diagnosed with a form of pulmonary fibrosis with scaring of lungs--- diagnosed as perhaps silicosis from inspecting construction sites- disease waxed and waned - improved with steroids - although weight gain and cataracts. He is in his mid 80s and doing fine.
Also in hindsight- my grandmother (born in 1881) and was the postmistress- developed a respiratory problem - not TB and never smoked. She owned a large house heated with coal. At one time she was thought to have an issue due to the coal dust in the air- as she was skin and bones and her chest x-ray showed granulomatous disease. In retrospect, sounds like sarcoid-- although she died of her lung disease in 1967 age 86, having lived independently till almost the end.
My own experience with Sarcoidosis is also not clear cut or well defined. When I was in medical school, I took an interest in hand surgery and had the opportunity to work with Adrian Flatt- the world's leading hand surgeon and expert on rheumatoid hand. He was developing a joint replacement for rheumatoid hands, and I also met with Swanson from Michigan who was developing an alternate silastic joint replacement. I got to meet and know MANY patients with rheumatoid hands and I knew what I wanted to do.
During my residency training, I developed pain in my hands, and feet. a migratory polyarthritis - which made me doubt a life of orthopedic surgery --- I was diagnosed at Mayo Clinic as sero-negative RA and started on plaquinil and steroid bursts plus orthopedic shoes and night braces for hands. In the following years, I developed profound shortness of breath and had a variety of diagnosis from several pulmonologists - as my diffusion capacity dropped to 25%, and PFTs were below 50%. and I was short of breath with talking. The first pulmonologist suggested I go home- get my affairs in order, he said it was incurable, and treatment would be as bad as the disease. The second called it Hypersensitivity pneumonitis, and set up an open lung biopsy on the granulomas and a wedge biopsy of lung tissue- started me on high doses of steroids and referred me for a lung transplant. The waiting list at that time far exceeded my life expectancy 2 1/2 years verses 1 1/2 years. Post operative 5 year survivals were less than 50% at that time. I went on the list, but sometimes predictions are not accurate. On 80 mg of Prednisone a day- over a few weeks, my chest CT returned to almost normal and my lung functions improved to near normal. I was NOT cured of anything, but I was a LOT better. It has been over 20 years ago, and I am not dead yet.
I did have weight gain from steroids (up to 320# from 170#, and I am now a diabetic.) but in my recovery phase I have reduced the steroids and am back to 170# and my glucose levels are well controlled (with help of medication). My foot pain which had disappeared for years on the higher dose of steroids is back, and all my specialists blame something else or just ignore the foot pain. I am under care of a Sarcoidosis Team which includes pulmonologist, neurologist, rheumatologist, and others (podiatrist).
Sometimes it is like a Saturday Night Live production- nothing to see here. Pulmonologist says that the lungs seem to be OK, and the feet hurt must not be hurting for real, Neurologist says that the feet don't hurt because the Nerve conduction studies are unchanged, mostly. The rheumatologist started me on a TNF blocker, which seems to help, but as a treatment for Sarcoid not allowed- although since I have another nebulous joint disorder ok. The TNF blocker seems to help- a LOT- but it is expensive.
The endocrinologist isn't sure about Sarcoidosis, but I DO have a panhypopituitary condition, and something has destroyed the pituitary gland - which is likely sarcoid. My podiatrist thinks my feet hurt because of diabetes even though my blood sugars have and are well controlled.
So, Karen et al, Sarcoid may well be a catch phrase for a constellation of symptoms related to formation of granulomas which can occur anywhere as a result of an autoimmune reaction. Depending on which article you read... MOST persons with Sarcoid have joint symptoms, and of those most are in the feet! Most pulmonologists will have little background in rheumatology, and vice versa. Arthritis is just a Latin name for joints with pain. You have pain in the joints or you do not. I am less sure how you are diagnosed with sarcoidosis, but unless it is outright fraud- you do have the condition. If you have sarcoidosis AND pain in the joints in your feet- like me, you have sarcoidosis with foot pain (common). Your doctor should allow you to participate in the treatment plan. Chronic pain or chronic conditions other than terminal cancer are not good places to start narcotics or any drug that is addictive or habit forming. IF you do have Sarcoidosis, it is unlikely that you will be cured, but the disease is noted to wax and wane so it may go into periods of remission, but often not. Look up Methotrexate or discuss it with your pharmacist- as it is a wonderful drug but not always effective or tolerated in every patient. If you are NOT happy with your treatment or diagnosis (your feet still hurt) there are a limited number of centers that have programs to treat Sarcoidosis- see about a second opinion.
People can and do live long and productive lives despite Sarcoidosis, but like most chronic diseases, you need to make a plan, get involved with your own healthcare.
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🦋 Kerry Wong
Wow, Alan, there's so much here - what an incredible family to be proud of, though I'm sorry you've all had so many health challenges along the way. It is so difficult to get that diagnosis, because sarcoidosis symptoms mimic so many other conditions, and because doctors really don't learn much about sarcoidosis unless they choose to pursue it as a specialty. Thank you for sharing your experience here for Karen, for me, and for the rest of our community!
~🦋