Around two years ago, I started noticing some changes in my mother. Her skin color began to change, she couldn't fully open her hands, she had joint pain, her skin started hardening, along with a few other symptoms. Initially, it wasn't very severe, and neither we nor she took it seriously.
Around that time, we went on a vacation. After we returned, my uncle had to undergo surgery, so all the attention shifted there. Once again, my mother's health concerns were neglected. When my father finally had some time and began paying attention to her and everyone noticed visible changes in her appearance. She was taken to several good doctors, and after multiple consultations, we found out that she was suffering from a rare autoimmune disorder called SCLERODERMA. Our entire family was shaken. It was completely unexpected, and the diagnosis disturbed all of us deeply.
For those who don't know, SCLERODERMA is an autoimmune disease in which the immune system produces excess collagen. This leads to hardened, tight skin,and connective tissue, causing muscle and joint pain along with darkening of skin. As of now, there is no definite cure. In more serious cases, internal organs can be affected. In my mother's case, reports showed slight involvement of her lungs.
I cried day and night. Being the elder daughter, my mother shared everything with me, how she felt, what she feared. I constantly searched for answers, trying to understand the disease, hoping to find something positive. But most of what I read was negative.
This disorder changed my mother's life and our entire family's life. From the outside, everyone pretended to be fine, but inside, we all lived with the constant fear of losing a wife, a daughter, and a mother.
Society showed no mercy either. People offered fake sympathy, while others made insensitive comments like how my mother had become dark-skinned or unrecognizable. These remarks shattered her confidence and self-esteem. She stopped engaging socially and began avoiding people altogether. Eventually, this led her into depression. She is alive today because of her medicines. I tried my best to pull her out of this darkness, and I'm still trying. I stay with her, support her, and do everything I can to make her feel happy. Somewhere deep inside, I keep blaming myself. I feel like I should have taken responsibility earlier, that I should have put everything aside and focused only on her. I FEEL LIKE ITS MY FAULT. She is doing a bit better now. The disease seems to be under control, but there are times when it worsens. Still, I curse myself every day. Some of my relatives are extremely toxic. They don't understand her condition and constantly speak badly about her. I don't care about what people say, but my mother does.
I pray for her health every single day. I wish for a miracle that could make her completely better. I cannot imagine my life without her. I wouldn't be able to bear any separation from my mother. I love her. I love you, Mom.
If it makes you feel any better, my mother in law has lived with scleroderma for 30 years. In the mid 90’s she noticed similar symptoms but was faced with doctors who did not take it seriously. She knew something was wrong & pushed back every time they said that she was fine or being a hypochondriac. Her proactive attitude & family support system held her up while looking for a diagnosis. She also had a great network of friends. I have a feeling that if not this then something else would’ve come up with your mom’s friends & they would’ve eventually shown their true colors anyway. A true friend does not abandon in times of trouble. I’m so sorry she is going through this.
The first diagnosis is terrifying. The worst case scenarios show an awful quality of life. My mil is here today due to her persistence & constantly following up with her doctors & meds and immediately addressing any changing symptom. After diagnosis she eventually went back to work, still drives and is only now slowing down because she recently turned 80! Scleroderma is rare but it is not the death sentence it used to be. Do not yet mourn your mother’s loss, it’s hard but you’re her support now. Get her to PT, plan vacations if she is able and find positive activities to do together. Life will slow down a bit but it sounds like you all got it early and that is HUGE. I hope there is one day a cure and I hope to be as strong as my mil if I should face anything remotely like this.
This is truly motivating Thank you so much ❤️
I’m so sorry. Hugs. Wishing your mum lots of good health and happy days ♥️♥️♥️♥️
Thank you ❤️
I'm very sorry you're going through this but I think you need, for peace of mind, stop searching things online. Go with your mom to one of her medical appointments and ask anything yoou may have fears or doubts about to her doctor, it's best to have information first hand than from a dodgy site on the internet.
I also suggest joining the local chapter of a Schleroderma Support Group for patients and family so you guys don't feel so alone: https://scleroderma.org/scleroderma-support-groups/
You’re right Thanks 💌
I feel u bro. That fear's real af.
When I was a freshman in high school my grandmother was told she had two years left to live. She suffered from COPD. I moved in with her and I took care of her. I lived every day in fear of walking in one day and finding her dead. I did not socialize like normal teenagers did instead I grieved every day. I felt guilty. I felt like I wasn’t doing enough. My grandmother lived till 2014. And every one of those days I lived in fear of her dying I grieved her long before she was gone and it affected the time I had with her. After she passed away, I tried to go on with life. But I did not take care of myself and within six months I tried to kill myself.
I’d say all this to tell you, I have been where you are. I know that fear intimately.
Get grief counseling now. Find somebody to talk to find a support group you need them now. Because you’re already grieving and this is not something you should go alone on.
Thank you for sharing this. I’m really sorry you went through so much. Your words helped me understand how damaging this kind of fear can be, and I appreciate the advice. I’ll take it seriously. I’m glad you’re still here, and I hope you’re doing better now.
I am. I got therapy and I relied on the people around me who love me. One of the hardest things I had to learn was to ask for help when I needed it. I thought I had to carry my grave alone and we don’t.
Hats off to you. Asking for help isn’t easy. I would’ve leaned on the right people too, but I’m still unsure how they see me or whether they’d truly understand my situation. I’m slowly learning how to express myself and lighten the weight I carry. Even with my mom, I’ve never fully told her how much I love her or how deep this trauma is for me. Still, I know she’s the one who understands me, even when I don’t say a word.
I don’t really share things with my father, and I don’t know why. I have a younger brother, and I don’t want to burden him with any of this. He’s still just a child. So it’s mostly just me, my mom, and my father carrying our hurt quietly, all of us wearing smiles on the outside.
I think that’s the burden of being the oldest. Because I was the same way I tried to protect the younger younger kids by taking on a lot more for myself
I would suggest having a conversation with your mom expressing to her how much she means to you. Ask her if there’s anything you can do to make her more comfortable and make sure she still has a wonderful quality of life. My grandmother loved going and doing things right up until the end. Having an illness that you know is not going to end happily is not an immediate death sentence. So truly appreciate the time you have but make sure you take time for yourself because caregiver burnout is a thing and it’s a bitch to handle.
That makes a lot of sense. Being the oldest does come with quietly carrying more than we should. I really appreciate you sharing this and for the reminder to take care of myself too. I’m still learning how to balance protecting the people I love while not losing myself in the process. Your words mean more than you know 💗💗💗
Feel free to reach out to me if you need to talk. You can DM me anytime. I hope everything works out well for you.
Thanks🙌🏼💗
Calm down. It’s not that rare. And it’s not that serious.
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I understand your perspective, but reducing human relationships and illness to “market value” and “capital” isn’t helpful to me.
talking about my mother like a spreadsheet and my pain like a productivity flaw isn’t something i would appreciate.