St Thomas Lupus Trust

They don't care

I'm an avid Facebook user and other social media. I hit the like and love and cry etc buttons on their posts.

Needless to say I also post about my disease because it's important to me. I not only post in English but also in Spanish. I look at the posts and they seem not to get liked or read. So I wonder why people seem not to care about learning of others' diseases. To me Lupus is a big deal. I feel very alone in this fight unless I post to lupus groups or pages.

Anyone feels so alone in this fight?

4 Replies
oldestnewest

Im sorry you feel so alone with your condition but its nice that you can communicate in ways that make you feel better.

Does your condition limit what you can do? I don't know what your situation is, if you work or not, but I find that distraction can be a useful tool in helping me to cope with my conditions.

Apart from social media, are you able to get out to meet and mix with others? Perhaps even going to a face to face support group.

People in general I think do care or charities would never survive. Everyone has busy lives so until something touches them and makes them come face to face with disease, many will occupy themselves with other things in their life. Not everyone is comfortable discussing illness unless its personal to them.

Look locally for groups that you can join where Im sure you will find like minded people you can mix with.

Good Luck.

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Thank you for your reply.

To answer your questions, no, I don't work. My debilitating fatigue finally took a toll on me. I'm thankful the state where I live, health is a big thing and I was able to get my disability benefits in a short amount of time.

I'm in a committed relationship and he helps me out a lot. We try to do things together, but I'm limited to how I'm feeling that day. Since I go to many appointments (therapy, blood tests, see doctors), this takes a big toll on me to want to do many other things.

So I have a lot of time (after sleeping half the day). I read a lot on social media about many interesting subjects of my interests, which are many. So, seeing many blogs about my disease, I thought that it'd be good to teach others about it, too. I don't even post about it that much, and when I do, it's simple facts that are easily grasped.

I've learned my lesson. Another friend mentioned the same thing you did. They're busy, they're afraid, they won't care unless it touches their own lives.

So from now on, I'm not sure I'll stop doing this completly, but I won't care if they liked, read, made a comment on it or not. I'm doing my part as a patient.

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Good for you. You don't need to worry about what others think. As I mentioned above though perhaps joining a local support club which you can attend say once a month, will give you the opportunity to socialise with others in your local area.

Also you becoming an "expert patient" by what you learn about the disease yourself, will only help to give you the tools to better control and manage your condition yourself.

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Hi I don't think that people don't care I think that they don't understand the illness, which I think is very sad because it's sl debilitating best wishes norma

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