OP! I’d be Interested In your Dx, but feel free to PM me. Last month I got DX with RA. I’m so focused on the siacitca, can’t deal with the RA. On positive note, got a shot for sciatica today!!! Yeah
In the same boat, but don’t find it helpful at this time to talk to others in my situation. It probably took me a good year to process this and frankly give myself permission to live with some level of denial. This is my coping mechanism and allows me to live a somewhat normal live with my incredibly supportive family and a handful of friends. And I did have to literally give myself permission to stick at a good part of my head in the sand - I’m normally a straight forward, go at things head on, don’t beat around the bush person. But I couldn’t live with myself facing this new reality head on day in, day out, it took too much out of me. I’ve been able to keep a pretty positive attitude about treatments (even if they suck, it’s always better than the alternative 
) and have a doctor who is fully invested in helping me beat this as long as I can.
Helping others who are facing this does help me. The doctors and nurses I’m with say my positive attitude is the biggest help to others.
My heart and prayers go out to others in this situation. Now if I can just make it to my son’s graduation in December…that’s what has truly kept me going.
Completely understand and I see nothing wrong with some denial as a coping mechanism. I have very severe eye issues - suffer from hereditary degenerative eye disease - very high risk for early onset macular degeneration, etc. My mother is partly blind. I really try to not think about it. There is no treatment right now - so what’s the point? My vision deteriorates every year. I have vision loss in low light situations and have lost depth perception. I barely drive anymore.
I did tell a co-worker a few months back as I was so stressed over an upcoming retina specialist appt - and as I was explaining - she burst out in tears! This completely freaked me out and I have told no one since.
I just try to put it to the side and enjoy myself. I wake up every morning and thank G-d for the vision I have. I sit beside a window at work and take frequesnt breaks to rest my eyes, but also to just enjoy looking out the window. I have an incredible appreciation for everything I can see - take nothing for granted.
So - that’s my advice. Put as much joy in your life as possible. Limit Internet research on condition - I might look one or twice a year. Don’t dwell on it - not always easy to follow. Laugh at yourself when you can. I walked into a parked car last year - DH’s gray car in the shade in driveway. DH was amazed. I kind of bounced off. It was pretty funny. I mean, what else can you do? Laugh or cry? I’d rather laugh.
OP, look what you did. Reaching out here has helped others to tell their stories - not only to help you but by telling, they help themselves.
Take the tips above, think about them, and I’ll bet you’ll find yourself referring back to them and reflecting on them and choosing them at different times in the days and years ahead.
Yes, my nonprofit helps others with my condition, locally and nationally. It isn’t what I had ever intended but I have met some amazing people in my journey and helped many individuals and families. I do national volunteer work as well and attend national conferences.
When you are ready, I really recommend the myRAteam site. Literally thousands of people helping each other with everything from dealing with med side effects to finding good doctors to how to talk with your loved ones and everything else you can think of.
For people with breathing issues, COPD360social.org has over 20,000 people all over the world helping other folks with breathing issues and offering support. They also have some medical providers, physicians, respiratory therapists, RNs and others also offering advice and resources. The COPDFoundation.org is a treasure trove of free resources.
Thanks to OP for starting this thread. It is a heavy load to carry alone, knowing you have a serious chronic condition that they don’t really know enough to treat as well as anyone would like. As you can see, quite a few of us are similarly situated and making our way forward the best we can. Counseling can help some folks, support groups (online or in person) can also help, even if the conditions may be different there can be a lot of commonalities. Stanford as a chronic disease self-management book and online program that has helped some folks as well.
I too have a condition that will never go away and can, at best be contained, and at worse… well you provably can guess. It seems the older I get and face this continuing condition and have new things popping up all the time, I often get very down.
Talking about it here or in therapy can help. Not addressing it won’t help. I, too, am a head in the sand type person. I have been lucky so far not addressing issues. But I know I would be pushing my luck if I continue. Plus now, and in the past too, to be honest, if I ignore something, it is always in the back of my mind. I could tell you stories about lumps that I have ignored that resulted in surgery (benign) and caner( basal cell). Teeth issues and the genetic issue I was born with.
So here is how I am dealing, although not always completely successfully, mental health wise. Force yourself to go to the doctor regularly. My H made an appointment for me in one case. The more you go, it will get a bit better. I went from someone never going to the doctor’s ( decades) to visiting three different types several times a year. I need to.
I also try to get myself into situations that make me happy and get my mind off of my health. Travel, time with friends and family, concerts, worshipping, and not dwelling on my situation.
Good luck to you and I do feel for you.
“Of course, what we all forget is that there are lots of us held together by duct tape and baling wire (the western US phrase).”
Yup. There are a lot of people living with cancer, heart disease, diabetes, arthritis, mental health issues, and numerous other chronic issues.
It is perfectly normal, probably nearly universal, to feel down about this or to feel “disassociated” from the world when first diagnosed, during recurrences, right after discouraging doctor’s visits, and occasionally. However, at some point we all knew from a very young age that life was going to be temporary. To me living forever would be even more scary than not living forever.
One thing to do: Given a rough estimate of how much time we each have left, and how much health we can muster up, think about what you would like to accomplish in the time and with the energy that you have remaining. Helping others, donating (time or money) to charities, seeing parts of the world, getting our garden into beautiful shape; Which important items would you like to get done?
For many of us on CC, helping our kids grow up and become self-sufficient is probably the number one item on the list.
For many of us on CC, especially Parent Cafe, we have already helped our kids grow up. So now it is time to focus on, well, me.
But you, not meaning you DadTwoGirls, cannot possibly understand what it is like to be told you have a, chronic, fatal, debilitating, etc disease until you have been diagnosed.
As I read on one friends page today, " You do not know how it feels to be my age until you are my age."
I have a chronic disease that was diagnosed when I was 20, though I probably had it for about 2 years before that. When I was first diagnosed, I was told that I would be in a wheelchair by 25. I’m pushing 60 now and still waddling around. I graduated from college and law school, have been working as an attorney for over 30 years, have 5 children and am currently in remission.
The one thing I would say is that counseling and support groups did not work for me. All they did was make me more depressed and upset. If you haven’t tried one for your particular illness, I encourage you to do so, as you may find it helpful. However, if you don’t, do not feel like you need to continue with it. Very few people in my life know I have an illness. Most people would be surprised if they knew and i prefer it that way.
I have MS and was diagnosed about 13 years ago. It was quite scary at first but now it is just my life and I have to say I’m one of the “lucky” ones where the symptoms haven’t really gotten worse. Living well, eating well, and having low stress help enormously, so take your doctor’s advice and take care of yourself!
I too have found support groups a bit depressing but there’s probably one out there for everybody. It doesn’t even have to be a specific illness support group - it could be a gardening club or a meditation class. Follow your own path and talk to us here all you like.
Hugs to you OP, and to all the others on this thread who are suffering the effects of chronic illness. My mother suffered from lupus and RA for 25 years. She carried the emotional burden herself for all those years; never wanted to dump it on the family and for whatever reason never sought out a support group. In hindsight, this made the suffering much worse. We kept our own heads in the sand because she wasn’t inviting us into any larger conversations, so while we helped her with the day to day physical struggles, we provided very little support in her emotional struggles. And of course all those emotions had to go somewhere, which was usually snippy comments and angry outbursts, often directed at her hubby whom she loved dearly and was her caretaker, or her daughter-in-laws and certain grandkids. None of her friends had any idea how much pain she was in, because she “kept her chin up” as much as possible in public, and they too didn’t provide a level of support that they could have had she been more open with them. In fact, they actually drifted away as her handicaps became more severe, because they didn’t feel comfortable helping her with things like getting in and out of the car, up from a chair, etc. So this was all a vicious cycle of no support for emotional needs causing an escalation in emotional dis-ease which I’m sure added to the progression of her physical disease. Bottom line - I agree with others that seeking support is important, and I encourage you to be open with your family and certain friends about both your physical and emotional struggles. I deeply regret not having done more to support my mother’s emotional needs, and not making the effort to have the deeper discussions with hers because it was easier to just deal with it all at the surface level.
Thinking of you, @SouthernHope and all who have responded with their own health challenges. So many ways to manage it, and what works can vary over time. Just coming out of three years of severe pain post injury; no chronic disease yet unknown mobility and ambiguity about pain resolution. Have also had multiple life threatening illnesses in the immediate family, including the kids. Changes your world view: found it increases both empathy and a sense of vulnerability. It can make the world small and it may need to be at times. I appreciate this thread and wish all the best with their health problems.
If a support group of some type beckons, yet the first one tried wasn’t a fit, consider trying others. Lots of variability in phase of disease, format, personalities and facilitators exist.
OP here and with so many thanks. I went home last night (and thank goodness, I had the house alone last night) and first cried a bit feeling sorry for myself, and then cried a few bitter tears because I know some awful people who are in excellent health, and then finally just sort of petered out…what can you do.
This advice/warmth here, man, you guys are too much. A few people have asked about the condition and I guess I’d say that it’s along the lines of me having the same body parts as everybody else but one of those body parts is going to stop working long before it does for other people. And that’s going to be a bummer. But life is odd…and not always linear…and who knows what might happen. I’m grateful for the support i received here and i felt 1 million times better on the subway this morning.
I’m so sorry you are going through this difficult time! I don’t have first hand experience, but my very favorite brother lived with COPD for years. Even though he was finally able to break his addiction & quit smoking, the heavy smoking for so many years had caused irreversible damage to his lungs.
He hid the extent of his failing lung capacity from everyone except his wife. He would go to great lengths to get to meetings early so no one would see him walk a short distance, stop and catch his breath, walk some more, stop and catch his breath, etc.
I knew he was acting differently the last few years, but I did not know his COPD has progressed to the point that he should have been on oxygen 24/7. It wasn’t until he was hospitalized for extremely low O2 levels, and the doctors were talking to me about how many years he might have left that I first learned the extent of his illness.
He told me the reason he didn’t tell anyone is that he didn’t want his family and friends to treat him differently. He didn’t want to see pity or sadness or worry in their faces. He just wanted to be himself! Not a person on their death bed! He wanted to laugh and joke and enjoy each day he had left! So, I came to understand why not everyone would choose to share their health status with their circle of friends and family. Therefore, I see the value in the suggestions upthread of online support groups.
My brother did eventually get a double lung transplant, and he has been one of the lucky ones, doing well a couple years post-transplant. He is a permanent patient though, always at a doctor’s appointment, and he knows the clock is ticking. I recall reading somewhere that 50%? of recipients are dead within 5 years. He has no idea how it will turn out for him. But do any of us?
What he has done is move forward, with deliberation, on his “bucket list”. He has really given a lot of thought as to what’s most important to him, and he’s been focused on it. Primarily it has been spending time with his favorite people, helping others (he goes to lung transplant support groups and visits people in the hospital), looking for ways to brighten people’s days, and doing his best to get out and travel.
Big hug, and wishing you peace as you navigate this part of your life!
Unfortunately I can top almost anyone of conditions…but I am in remission on three things, vision issues dating from when I was a child which has greatly affected my everyday life, Parkinsons which is progressing slowly…and a few minor things. I do take a mood elevator which helps a little.
When I start feeling…depressed, why me?..I say to myself…this is today. I am not dying today. Let’s get on with today.
Yes, before I went “public” with my condition, I checked with my kid and H because it affects all of us. One does not really want celebrity status from being a patient and advocate but sometimes it is unavoidable in championing a cause and trying to get better treatments and cures.
Adding my 2 cents on in-person support groups. I tried 2 of them. They didn’t work for me. One was in a church and very religious. As an atheist, I don’t much mind if there’s some religion in a group or whatever but when everything is answered with “it’s all in his hands,” it’s too much for me.
The other group was super active (both in terms of physical activity and in terms of what they do for the illness/community/etc) and made me very depressed because I am no where near that point yet and it reminds me of everything I can’t do anymore. I might rejoin if I go into remission or start coping better.
So definitely support groups aren’t for everyone- especially if you have a rarer disease with limited support groups.
Personally, I have coped by being very open with my illness. It’s definitely NOT for everyone but it works for me. The added “perk” of it is that with being open, many acquaintances and/or their loved ones have come forward to talk to me privately. They want someone who understands what they’re going through but don’t want to be open about it.
OP, just remember that there are many people who are also privately going through the same thing. As you can tell from this thread, many of us are right here. It is OK to come to us and cry, whine, and be bitter (either in this thread or in PMs). You are allowed to have and express those emotions. Too often, we’re told to smile and hide our pain. Screw that. Pain shouldn’t have to be experienced alone IMO.
I will say I wasn’t interested in IRL support groups, though I was on a couple for my leukemia for about eight years. I did make a bucket list in 2002; #1 was seeing my sons graduate from HS. We’ve done more travel in recent years while I am healthy enough to do so. I do Judaic fabric art and have been making heirlooms for lots of folks. Probably should make stuff for my family. Have also been sinking lots of creative energy into making quilts for women’s shelters, and instead of the stressful 401k job, I work three mornings a week at the synagogue. Uses many of the same skills.
“Be kind, someone may be fighting a battle you can’t see” became my motto.
If not for the friends I’ve met here on CC (online and IRL), I would be in a world of hurt. @SouthernHope, I hope we can be there for you.