My Advice to Sarcoidosis Freshmen
When I think of the nearly 20 million students projected to attend college this fall, what comes to mind are the freshmen stepping into uncharted territory. As my niece, Jocelyn, put it, “You go from being at the top of your game senior year of high school to being at the bottom and clueless again.”
Old comforts are left behind, and college freshmen, like those diagnosed with sarcoidosis, must start over and learn to navigate a new environment. Tips I’d offer college freshmen, should any of them want to listen to me drone on about life, are the same tips I would offer people recently diagnosed with sarcoidosis.
Education is key
Soak up as much knowledge as you can. Don’t blindly accept the word of physicians when making decisions about your health and treatment. Get a variety of opinions and do your own research so you can make informed decisions.
Use credible medical sources, like Bionews Services, the U.S. Food and Drug Administration, Drugs.com, the Centers for Disease Control and Prevention, patient associations, nonprofits like the Foundation for Sarcoidosis Research, and research institutions like the Mayo Clinic and the Cleveland Clinic.
Additionally, PubMed Central offers a free archive of biomedical and life sciences journal literature, including sarcoidosis-related studies. For more help gathering information, read these great tips from the National Institute on Aging.
Relationships come and go
There’s a popular saying: People come into your life for a reason, a season, or a lifetime. Being diagnosed with a serious illness, such as sarcoidosis, will not only test your relationships but also accelerate the deterioration of those that were not meant to last. Hold on to those who uplift and support you through the good times and bad. Let go of the fair-weather friends, family, and acquaintances who are around when you are healthy but disappear when you are sick or in need.
Bullies aren’t just in school
Develop a thick skin. Battling sarcoidosis requires hidden superpowers, like warding off insensitive comments from people who don’t believe your illness exists because they can’t see it. Attacks may come from physicians, family, friends, co-workers, acquaintances, and even strangers. If a physician dismisses your symptoms, find one who will listen. If friends and family needle you with negative comments about your health issues, eliminate them from your life. If you can’t avoid them, limit your contact because toxic emotions impact not only your sarcoidosis but your health overall.
Don’t be crushed by setbacks
Sarcoidosis may knock you down at times. Pick yourself up and get back in the fight. Some days sarcoidosis rules my life. I’m unable to accomplish much of anything. Other days, sarcoidosis takes a backseat, allowing me to achieve more than I thought possible.
My niece recalled being overwhelmed, nervous, and filled with doubts during her early days of college. “But there were bright spots too,” she said. “I met one of my close friends in those first few days.”
A sarcoidosis diagnosis evokes similar emotions. Difficult days may or may not lie ahead depending on the path and progression of your disease. Much like my niece, finding the bright spots means traveling down your new path with hope and courage to see where it leads you.
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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 Services, and are intended to spark discussion about issues pertaining to sarcoidosis.
About the Author
Maxine m Headd
I like this. My battle with sarcoidosis has devastated my life, but I still live with it. Now i am battling a more destructive enemy my heart has started to compete for attention as well. It is a much bigger call than sarcoidosis and the inflammations that come with it.
Athena Merritt
Maxine, thank you for taking the time to reach out. My prayers are with you.
Yvonne
I am battling Sarcoidosis. I was not taking any medication. This is how I know I can walk with this disease without medication within reason. I explained to my primary care on several visits how I was feeling and she ended up giving me an prescription medication bc my sinuses was really really bad. I was bitten by a dog and I received from her an antibiotic. I think this dog bite saved my life. My body was tired, aching, tender to touch and I just could not move forward. I had to engage in two moves one from a toxic relationship and the other lead me to moving home. Devastatingly, I found out after moving home I was living with this unknown disease for over 2 yrs and I had to be rushed into surgery to have my 4 lb spleen removed. The extra battle was work and my Sarcoidosis doctor. It didn’t make since to keep running test after test but no waiting to see what improvement the medication was providing. My doctor wanted to change one steroid to another more expensive one. My body wasn’t rejecting the medication it was use to the medication. She was acting like the medication should heal me. I was forced to quit my job and I fire my doctor. This is the 2 condition I had to live with before finding some type of new way of living. I have always eaten healthy and exercised. When I mention to my doctor what I was doing bc I have been on steroids since the inception of my disease. She said ok that’s good. She offered nothing. However, she did say start back on the steroids. All of my change came from education via the internet. I started eating the things I like from the suggested list, antioxidants, fruits and vegetables, fish and poultry, etc. I don’t experience the bloating so much, my vision is in and out of blurry but not as much, I still have pain but not as bad, my body in spots are tender to touch and my sinus is back to a little stuffiness. I still have hope for me.
Yolande L Matthews
Yvonne, my name is Yolande', I have lived with sarcoidosis for thirty years now.Back in my first year,I met a wonderful doctor. He informed me that I would have to become my own doctor. I needed to learn to listen to my body.
To keep a written medical journal of my feelings on meds,and off. I will add this keep those journals. For when or if you have a problem that the new meds are not helping one of those ones might be the answer. I made the mistake of not keeping them. for i was feeling so good and felt i was free. Now when I have a problem, doctors ask if I can recall the medicine name from years past.
For the most I stay well and off meds. When I have to return it is upsetting. But I have learned so much I now teach my doctors. lol But first I had to learn my own body and also give up doing some of the things that I enjoyed in the past.
The adjustments are not always easy on family or myself.Yet, I have made the adjustments and will continue as my life changes. stay strong you are not alone.
Athena Merritt
Thank you for enlightening and inspiring me with your 30-year journey with sarcoidosis and sharing such great advice! The things we have to give up and the adjustments we have to make to live with sarcoidosis are difficult. On my better days I still sometimes fool myself into thinking I can go back and enjoy the things I was forced to give up only to pay dearly for it the following day. Wishing you the best going forward. I am with you on this journey.
Athena Merritt
Thank you for sharing your experiences. I hope you continue to have success in your treatment efforts. Hopefully by sharing our experiences as a community we (and our physicians) can continue to learn more about effectively treating the many symptoms of sarcoidosis.
Jean
Hi Athena...
New sarcoidosis patients also need to remember to have a thorough cardiac workup, even if they have no heart symptoms! The most common first symptom of cardiac sarcoidosis is sudden death, meaning there are NO other heart symptoms, so sarc experts advise that all of us have a complete heart check. This means EKG, echocardiogram with strain, and a dedicated cardiac MRI or PET scan.
Athena Merritt
Thanks for the tip Jean. It's the first I've heard of this recommendation. I had a full work up several years after diagnosis only because of issues with POTS.
C
Hi Athena, I agree with Jean To get the full heart workup and some previous comments that stated To not just go off what doctors say. I dont think many doctors realise that Sarcoidosis can kill. My Husband was diagnosed with Sarcoidosis in 2012 and we googled and got all the worst answers in the world only to be told that this disease wasnt life threatening even though when you use DR Google it says rare cases have been found that this is the case. I am now coming to terms of living alone as we thought my Husband was ok as his lymph nodes hadn’t grown much over regular checks so we were not told to change anything in way he lived or worked. My Husband passed away very sudden and unexpected in June 2019 and I have been told this was why. Sarcoidosis. Yet when he went to doctors in Dec 2018 he was told to come back in February of 2019 for some further checks and the doctor just told him to do a 5 day dose of steroids and that was it. Now I sleep alone. I cannot recommend any more strongly than to tell people of him being gone that to get themselves checked regularly and stick to their guns if they want more tests. We had the pet scans also, he wasnt a fan of those but I always said if it finds anything its better to know. When we found ourselves waiting for results in Dec 2012 and It was the longest wait we have had ever. Im not sure if this helps anyone but we were told he had Sarcoidosis but were never really told what it entailed. We had to google. In the end his heart stopped suddenly like what Jean said may happen. Shame we have now found all this information a little late for my soulmate To still be here.. x
Athena Merritt
Thank you for sharing your devastating experience with sarcoidosis with me and others. A reader who commented on my “Stumbling into the Unknown” column back in April similarly lost their son without warning to cardiac sarcoidosis. Like you, they are trying to make others aware. I’ve also received comments from others on my columns that are experiencing sarcoidosis-related cardiac issues. I had exhaustive testing about 2 or 3 years ago, but nothing since. This serves as a wake up call for me and I will make this a priority this year. I hope others will heed your warnings as well.