An Open Letter to My Late Friend With an Invisible Illness

Lisa Weber avatar

by Lisa Weber |

Share this article:

Share article via email
raynaud's home remedies | Scleroderma News | survivor's guilt | banner image for column titled

Decades ago, you passed quietly through the background of everyone’s busy lives. My heart still aches for you, even more now.

You see, I didn’t know what you were going through for all those painful years. Your invisible illness was just that — invisible. I didn’t understand it, and I didn’t take the time to see what couldn’t easily be seen. Your reality was largely ignored when you needed people to notice it. I failed you.

You were desperate for the doctors to believe you, too. They lacked the knowledge to help you, and that’s so unfair. I now know how difficult it is to live with a disease without treatment. Being told you’re “just depressed.” Having doctors say things like, “You’re too young to have these issues.” You were suffering from something uncommon, so it was dismissed. Those experiences are often worse than the physical torment of a mystery illness.

People labeled you a hypochondriac. They said you were just an attention-seeker, that you were weak. The thought of this is unbearable. You were living in pain and fear, while so many around you put tape over your mouth and a bag over your head. You were a victim in many ways. I’m ashamed I didn’t know enough back then to be your ally. You simply needed one person to free you from that lonely prison.

I try to take solace in the fact that I was young and naive, but your story will always weigh heavily on my soul. I can’t fix how I failed you, but I can promise that from now on, I’ll keep amplifying stories like yours. I’ll never stop being a voice for you and those walking similar paths. No disease should make a person feel invisible.

Recommended Reading
Global Genes 2021 RARE Patient Advocacy Summit/ now open

Register Now for Global Genes’ RARE Patient Advocacy Summit

Gone, but not forgotten

I remember the day you died. At the time, I didn’t understand why. You still had so much life to live.

No one really talked about your illness. Now, I wonder if it was because they felt guilty for not believing you. After all, no one dies from a make-believe illness. The day you moved on from this world was the day your illness finally became visible — but this visibility shouldn’t have required your untimely death.

To this day, no one knows what medical condition you had or why your body failed at such a young age. Has medicine advanced enough that you would have been diagnosed today? I can only hope.

This world was cruel to you, and I’m so sorry. You didn’t deserve to suffer alone. You should have had more support. I wish I could have been that person for you.

We can do better

Sadly, this story is not uncommon. People with rare and undiagnosed diseases often suffer alone. Their experiences are constantly invalidated and diminished, even by those who love them and mean well. We can all do better at empathizing and supporting one another. It starts with an open mind and trust. Open your heart and listen. But most importantly, believe them. Invisible illnesses may be hard to see, but they are real.

If you are suffering alone, please reach out. Keep looking for someone who will listen. There are doctors, support groups, and strangers willing to hear you. I am listening! Everyone deserves treatment and a hand to hold during difficult times. Every illness has a face, and together, we can give them each a voice, too.


Note: Scleroderma 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 Scleroderma News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to scleroderma.


DIANE p. DIXEY avatar


Beautifully done. Thank you

Kathy Green avatar

Kathy Green

Thank you for your eloquent words.
Beautifully written.

Victoria Lynn Menard avatar

Victoria Lynn Menard

This is so true, its not that they don't love us, its just that they don't get it. The pain is real, I dont stay in bed all day because I want to, this disease has taken my life from me. I fell this morning trying to use the rest room, my knees gave out luckly it was a soft fall and I didn't break anything.

Diane Elliott avatar

Diane Elliott

Thankyou..yes I have lived with scleraderma since I was 49..I am now 73 and people still tell me how healthy I look..(makeup is good at disguising the horrible red spots all over my face)..the disease has finally caught up with me and affects every major organ but I refuse to give in..still got things to do..never give up.

Margitta Hapke avatar

Margitta Hapke

Hi, oh I understand going through the same . lately going to the washroom costs enormous energy, never mind using stairs.. Will keep you in my prayers , sending hugs

Margitta Hapke avatar

Margitta Hapke

Hi Lisa, you are doing an unbelieveable job here. 1000 thanks.
just got back from hospital, that incl aScleroderma clinic, were not prepared to take my bed out of the blasting sunlight, I have severe SLE lupus as well. and sunsensitive lights meds. I was called a demanding bee, nothing can be done for me, etc came home with sunburned back red lupus spots on head , sclero swollen face.
however the first night they saved my live. why so I could die soon after sun is lupus super trigger enemy one.
I will write an article about this as well as send pics incl a complaint to hospital
the research team I am enrolled in for SLC did a great job.
I do have pneunomia, had esophageal dilation, and a super rare candida infection in esophagus , on some more bags of meds,
love + hugs to you lets keep fighting

Anne Payne avatar

Anne Payne

Weeping uncontrollably reading this article, you could have been writing about me. For the last twenty years I feel I have been labelled with the ‘ it’s all in your mind’ badge. I live in the UK where health care is free but despite this I had to pay privately, after my NHS Consultant wrote to my GP to say ‘when is she going to get the message that there is nothing wrong with her!
I was eventually diagnosed with two serious heart conditions and also a diagnosis of ME (chronic fatigue syndrome, but given no treatment). I always felt that the ME diagnosis was incorrect, my symptoms didn’t fit with what others were describing.
I have battled on over the years with disbelief from ‘friends and wider family’ but the symptoms which I now sincerely believe to be Systemic Sclerosis have got so much worse in the last twelve months, severely affecting my legs, hands and now arms, face, swallowing etc.
I am now finally undergoing diagnosis evaluation for Scleroderma but now at age 69 I feel time is running out. I just wish that someone had listened and taken me seriously years ago, I could have had proper treatment and not gone through some of the pain and humiliation I have felt.
Thank you so much for having the courage to write this article, please don’t beat yourself up with guilt you are trying to make amends to your late friend and do something to help the ‘ Invisible Army’. I say army because I feel along with so many that I have to put on battle armour each time I visit my GP or hospital.I am now finding really kind people, just wished it had happened sooner.
Don’t want to sound sorry for myself, I have hopefully come to terms with what is happening and I wish all on this unfortunate journey with Scleroderma all the best for a brighter future.


Leave a comment

Fill in the required fields to post. Your email address will not be published.