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Sjogren's Syndrome Support

Have you lost friends because of your Sjogren's?

The earlier topic about isolation kind of set me off. I guess I really still have a lot of anger and resentment about the fact that most of my so-called “friends” totally ignored and abandoned me when I first got sick.

I was diagnosed in September, 2014. I was only 36 and I’m male, so I don’t fit the typical “profile” at all. But Sjogren’s Syndrome hit me like a sledgehammer. Before I was diagnosed, I was suddenly having a lot of scary symptoms hit me one after another. First, I was tired all the time and I was practically bedridden. I could only leave the house for maybe 30 minutes to an hour at the most, and then I would have to come back home and lay down. Then I started getting dizzy and having headaches every day. Then my feet were freezing cold and my toenails were turning blue! I had no idea what was happening to me, and I felt like I was dying. All my friends were suddenly “busy” all the time. I just wished someone would come over or call me once in a while, even just to talk and see how I was doing…but nope, nothing. One of these friends, who I’ve known since high school, even had the nerve to tell me “Well, you know, if you’re just sitting at home all day doing nothing, you’re probably just depressed.”

My parents weren’t supportive at all either…but that’s a whole OTHER story. I really thought I was going to die by myself in my bed. The only reason I even got a diagnosis and got medicine was because I kept pushing for tests and going to different doctors. No one was helping me at all. In fact, the exact opposite…my parents thought I was “exaggerating.” And all the friends I had known for years suddenly disappeared.

When I became sick, it’s like everyone just had something better to do. I never got any visits, no calls, no texts, nothing. Even after I was finally diagnosed and now there was PROOF in wasn’t “all in my head,” no one cared about how I was doing. I guess now that I couldn’t do as much as I used to, I wasn’t as much fun to be around.

I’m sorry, I’m venting but I still feel so much anger about this. I have always tried to be a good friend to everyone, but then when I needed people the most they abandoned me.

Did anyone else here lose friends after they got Sjogren’s? You know, they suddenly stopped coming around to visit or stopped calling? How do you deal with resentment? The disease itself seems so unfair, but I can learn to accept it eventually…what makes it worse is the way people treat me.

I’m sorry that it’s been so rough for you. Yes, chronic illness, especially when there’s no solid diagnosis, can be very rough on people. I haven’t had it so much now, but I lost a lot of friends in my mid twenties when I was experiencing chronic pain as a result of a herniated disk and two back surgeries.

I have kids and live in a great neighborhood where people really pull together. We’ve been through a lot as a group, including someone who is now recovering from thyroid cancer that had spread. When I had surgery on my hand I even had someone doing my hair and tying my shoes when my daughter wasn’t around to help me with it. It’s a combination of proximity and personalities.

I also volunteer, even when it’s challenging. Putting yourself out there for others can not only be rewarding, but can help make connections. It may not be feasible right now, but may be something to consider for the future.

Unfortunately,. many people cannot cope with the idea of chronic illness-first because they have some fear that they might catch "something" from you, secondly there is nothing they can do to "fix you" (especially your male friends) and your family and other close friends do not know what to say or don't want to "see you suffering".

You may wish to find out if there is a local Sjogren's Symptom Support Group in your community by visiting the Sjogren's Sydrome Foundation website at http://www.sjogrens.org/home/get-connected/support-groups/us-support-groups. We had a local group in my area for awhile and it was a safe place where you could discuss your symptoms, learn coping skills, learn more about medications and such. There are not as many men who are affected, but the information and understanding you might receive from such a group may be what you are looking for.

There is also a book called "A Delicate Balance: Living Successfully With Chronic Illness" that may provide you with some insight. It is sold on Amazon.com and probably available through most book stores.

Stoney had a great suggestion about volunteering. Activities like that put you around generally kind people.

My biggest rejections came when the symptoms were getting really bad but I had no diagnosis…for most of the same reasons as you. Now, I have surrounded myself with a very different quality of people and I am much happier for it. It was definitely a long haul and I am sorry to hear you are going through it. Hang in there and know that we are here.