Telling People About My Illness: Tmi?

[Sylvie33]

I am just coming to terms with the fact I have a chronic illness: diagnosed and in full flare only since April. I will save the precipitating events for another post .

I have been in isolation since this time: partly because I was depressed (this is lifting) but mainly because I am quite sick and sensitive to stimulation. I also find the task of responding and acting as if I were not ill daunting and exhausting. I even find the question "how are you?" extremely difficult. I also, for the first time, do not look well. I have lost weight and my hair and skin are thinning. I met with several old friends recently, (it took an incredible amount of energy) and I know I scared them. Other friends have stopped calling, and I am frozen -- I get it -- it is difficult to relate to me now (I was once unusually active and vibrant, and so are these folks), so I do not call either. I miss them. I miss me!

I have held back information -- even from my adult son, and I only recently told my sister all the details because her husband is gravely ill.

I have several wonderful friends who have seen me through and a very supportive husband. But what do I say to others? I feel I am now in a different world (part of my new very active participation here -- a real comfort). I am in a different world, which many of you have lived in far longer than I have.

I would love to hear from you about strategies/advice.

Thanks so much!

--Sylvie

[Nymph]

Hi Sylvie,

This is a very difficult aspect of chronic illness. The answer is not simple, either, and probably each person will deal with it slightly differently.

I only talk about my health issues with certain people - some close family, some friends. I have started to talk about it at school and work in a professional context, as needed. I share the minimum amount of information that I need to clarify my limitations or choices.

And here on Dinet, in my Sjogren's group, in my local support group, I can say whatever I need or want to, to people who get it. I am thankful that I also have those family members and close friends who get it. Not everyone has that. Other people can think what they will and I am not going to try to manage that. No energy for that ****.

Once in a while I will post something educational or interesting on social media about my health issues. I try not to do that very often as I don't want that to become my identity. It is a way to educate people that is a little easier than a direct conversation.

I know it's a new world, and a strange one! But you're not alone here.

[Sylvie33]

Thank you Nymph,

Reading over my post this morning it does sound pretty bleak, and I do feel better this morning. I think I just have to get used to the good and bad day thing in all realms: my body and my feelings.

I already feel heartened by your kind response. Thank you!

I would still love to hear from those who no longer have the stabilizing environment of a workplace.

Thanks all,

S

[statesof]

Hi Sylvie, in my life I've found that I only have a few friends who I can speak openly about my POTS struggles with. With most people I tend to lose them when I begin explaining what POTS means, or what the autonomic nervous system is. And I do find it difficult because most people can't really understand how this affects my life, some of my friends just seem to see it as not being able to do exercise or drink anymore.

That being said I actually haven't really found someone who I could just be completely honest with and say I'm really struggling with this or that today, most the conversations about my POTS tend to be a bit more superficial, or more geared towards what I'm doing about it. So I think that probably opening up and just being completely honest is something I may need to try more just to see how receptive people are about it, that being said on my worst days I usually find myself laying down on my couch and not seeing friends so maybe I need to strike a better balance.

[p8d]

Hi Sylvie,

I'm afraid I can't offer much help but I am pretty much in the exact same place. Diagnosed March, still struggling to find right balance of meds/exercise. Some people I thought were real friends have disappeared, acquaintances have stepped up. I am most depressed that the people I helped in their time of need have not been here for me. I thought they were true friends, I'm working on accepting that they aren't and express deep gratitude to my husband and those that do help. I'm trying to accept I will never be how I was before. Some days (good days) I can handle that. Unfortunately emotions are one of my biggest triggers so I am learning to let most things go. For me learning patience has been hard, as is requesting help but I have no choice. Thanks for sharing this thread, I am happy to hear others perspective and want you to know you are not alone (and neither am I).

[Sylvie33]

To my new confidants!

Statesof: I am lucky I have a husband to whom I can give an hourly update, but I still worry about his stress level. I am concerned you feel you don't have one real confidant (did I interpret this correctly?). I's like to tell you I found a a really nice and positive "talk" therapist (after talking on the phone first with several). Expensive, but it is an hour just for me. My mood has definitely improved after just two sessions, as she speaks so positively about each tiny step I take (i.e. making it to her office) and she refuses to let me talk about my accomplishments in the past tense! My neurologist is also "on call" for me, and has called me at home, which is amazing. Still, it is very different than just having my former variety of friends to choose from.

P8d, first of all, you ARE of great help to me because it is so comforting, as you note, to know others who are going through this experience. Our timing is so similar, yet I am still undergoing tests and have no meds yet.

I can really commiserate with your experience with friends whom you've helped in the past. I think this is part of the problem when we were once the active, "well" people, and they may still be needy. The flip side is that my highly productive friends are a bit freaked out by all this. As I have also had a few acquaintances step up now, I see the silver lining: I realize I was using some poor criteria to choose friends and now, like you, I really am learning to be appreciative and grateful.

HOWEVER:

I texted two people today. One was a guy I met once and bonded with months ago when I could still get to "special needs" yoga. He is my age and also had to go on disability (for an immune disorder). Although he wished me a "happy birthday" in July, I was just too sick to get back to him. I also wrote a very dear friend who promised to call last month and then did not (twice!). She says she will today. I feel forgiving.

I think all of those here who have responded to me so far are in a way suggesting I have some sort of "truth hierarchy" designed for the levels that each person I speak to can take. My sister and I (only sibling) had a very problematic relationship that has healed since her husband, and then I, became ill. We just have said to each other "we can only do what we can do." A mantra.

I am envious of Nymph's support group! However, those that have written me so warmly and eloquently here are becoming one for me!

S

[Nymph]

Yes, I think that your "truth hierarchy" is exactly what it is. I offers you freedom do disclose or withhold, while avoiding bitterness, for the most part, as you learn to accept people for who they are at this moment, and define your relationship from there. Good thoughts here!

[Katybug]

Hi Sylvie,

Sorry I haven't responded sooner but it's been a tough week. I have found that one of the silver linings in the cloud is that I found out who my true friends are. The people that stuck by me as opposed to the people who apparently only wanted to have a good time with me. I don't begrudge them that, I just now know who I can depend on.

The other thing that I discovered is that my friends and family were even more confused than I was about what I was capable of. So, I started taking the lead in making plans. I started small. I invited 3 of my girlfriends over to have pizza and girl talk. I told them I would order the pizza and they should be ready to provide most of the conversation because, at the time, I was having trouble speaking more than a sentence or two without starting to choke. We ate off of paper plates and had a blast catching up. We did that every couple of months at first and that was fine because I wasn't physically up for more. As I have had some improvement in my capabilities, we have changed over to meeting out for dinner. Nothing fancy, just at the local pizza and sub place. They are totally accommodating in meeting someplace close to my house because they understand my limited driving these days. My horse is retired so I only need to go to the barn once or twice a week but as I have improved, I plan my trips there on days when my "horsey" friends are likely to be there. Sometimes we have an impromptu pizza party or just sit in the lounge and catch up for a while.

What I found was that they were almost afraid/guilty/something to ask me to do things because they were afraid of making me feel bad or pushing me too much, etc.. Once I took the initiative to come up with things I could do and ask them, they were completely up for it and supportive of my special needs to make it work.

I hope you continue to find help and comfort here. This is definitely a tough road to travel but I believe that gifts come in strange packages. It often takes a while to find what the gift is but it's usually there ready to reveal itself when the time is right.

Take care,

Katie

[Bigskyfam]

Tmi for employers/ coworkers

I really felt if I shared info there would be more understanding. Instead it's getting old. Some Fam and friends feel the same way

[p8d]

Big sky,

Totally had the same experience. Seems people don't want to know. Right now I think my husband is in denial and only wants to hear I'm fine every time he asks. He tries to push me to do more and doesn't seem to understand I do what I can when I can. I say I'm fine most of the time or he thinks I have a bad attitude. I think he needs to see the neuropychcologist tomorrow not me!

[Sylvie33]

To all,

I've learned a lot from this thread and I thank you all!

As p8d pointed out, I think with a new diagnosis stress levels are just so high: and these, of course, worsen symptoms. I decided today I just have to lay low for for a while now and try to keep my good phone friendships up. When I feel better, I will do some things like Katybug is doing in sharing face-time. I just don't feel up to it now -- it is a licking wounds kind of thing.

Update: my old friend did not call -- and she was the one who originally set up the first phone date. I left a message for her, so ball is in her court. Yet, the guy I met at yoga and I have a phone date for tomorrow! My cousin, who called me for the first time in 15 years a month or so ago, also called again to see how I was. His wife is very ill and I will call her tomorrow.

I think Nymph has such good advice, which I think I certainly could have always benefited from: "to learn to accept people for who they are at this moment, and define your relationship from there..." Still learning....

Thanks again,

Sylvie

[Sylvie33]

PS: P8d:

Can you take your husband to your appointment? Perhaps your doctor would be willing to call him?

--S

[p8d]

Hi Sylvie,

Yes,he comes to all Dr appointments with me. I can't drive, walk to far without support. I'm totally wrecked today too so this is gonna be rough. Thanks for the advice/support. Glad people are contacting you. I can't even phone calls anymore but when I could they helped.

[Sylvie33]

Oh, my best to you p8d! Let's hope this is a short flare (and that your husband begins to understand...).

---Sylvie

[emartins]

I tell people a lot, but mostly so they're aware of my symptoms in situations where that would be helpful...at work...at the gym. Most of the time, I just tell people something simple like that I have to watch my heart rate and leave out the rest. I typically think, if you want to tell someone, ask yourself why you want to tell that person.