For Dopers with chronic, life-changing or -threatening conditions

Miscellaneous and Personal Stuff I Must Share
1

The past two months have been a bit more introspective than ever (if that’s even possible), as I’ve debated with myself and with various professionals about the wisdom of getting tested for Huntington’s. My argument has always been that the likelihood that I have the disorder is slim since I do not have the required family history and my symptoms only kinda-sorta fit. Plus, I was told that the test woud not be covered by my insurance and that it would be a $2K hit to my pocket to get it done. But none of my doctors have relented. I need to get the test done, they say.

So I decided I would follow their recommendations, and in doing so found out that my insurer would indeed cover the test (and that it cost more like $500 instead of $2K). I haven’t submitted the test kit to the company yet, but I will this week. I have a visit with yet another Neurological Expert in a few months, and I want everything squared away before I go to him.

I do not think I have Huntington’s, as I said. But I do think I have something. I’m not a believer in self-diagnosis, but it’s looking to me that I may (just may) have Parkinson’s. The only symptom that I do not have is resting tremor, but this apparently isn’t too unusual. But the other cardinal symptoms and some of the ancillary ones…yes.

I’m oddly stoic about the whole thing. Perhaps it’s because I’ve known for a while that something wasn’t right, so I’ve had a long time to work out all the scenarios. Also, if I do get the diagnosis (and I hope I get it right then and there, and don’t have to do wait another three months or go to another expert), at least I can stop on this long-ass and expensive journey of doctors’visits. After awhile, you get exhausted telling doctors what’s up…you start thinking maybe you’re exaggerating things or even making things up out of whole-cloth when they can’t tell you anything, or when the drugs they prescribe don’t work. You start thinking, “Well, it’s not like I’m in pain. It’s not like I can’t function. Maybe I just need to get over myself.” But then you’re reminded that you don’t live in the world alone…that people will eventually notice you limping or moving funny and will want to know why. Having an answer to tell them would be nice. So you continue on the search for answers, even if you don’t really care that much anymore. Well, that’s how it’s been for me…I shouldn’t say “you”.

So let’s say I do have Parkinson’s. Inevitably, someone will ask me a question and I will have to tell them. Everyone at work will know, even if I don’t make a big announcement about it. People who I don’t even work with will eventually find out. I don’t care about this. It’s the stuff that will inevitably come afterwards.

“You’re so strong. You’re an inspiration.”
“I don’t see how you keep on. It’s amazing.”
“You never complain and you always seem so positive.”

or

“How are you feeling today?”
“If you need anything, let me know.”
“Can you handle this?”
“I’m worried about you, living all alone.”

Simply, I’m concerned that people will be way more wrapped up in this diagnosis–that I may or may not have–than I will be. And eventually, their well-intentioned words will bug the hell out of me and turn me into an evil bitch. I will understand where they are coming from…that sometimes it’s easier to say something trite and meaningless when you’re in the midst of someone with a serious condition rather than just to talk to that person like you always have. But it will still annoy me, and I won’t know what to do to get them to leave me alone.

If you have a chronic condition, particularly one that is hard to “miss”, how do you handle overly nice people? If someone says, “You’re so strong. I don’t know how you handle it” what do you say? “Thank you”? Somehow, that doesn’t seem right but I don’t know what else you could say that wouldn’t come out mean.

2

I have no insight, but I am curious- what would be the right thing to say and do- from your perspective. Because, as you know, people are trying to kind and supportive, even if it’s done in the wrong way. So what would be a helpful thing to do or say?

EAT: And, I am sorry you are struggling with this health problem.

3

I guess the ideal would be everyone knowing that I have it, so I don’t have to deal with, “Why are you limping?” every five minutes (which they already do, and it sucks without having an answer!) But that’s it. No words of sorrow or pity or adulations for soldiering on. No one expressing worry or concern, or being nosy about treatments. I don’t care for any of that.

I guess I don’t want people reminding me I have a serious medical problem. I don’t mind people knowing about it, but I don’t want them to talk to me about it unless it’s something completely non-emotional. Like wanting to know my opinion about a particular neurologist in the community or something.

But I know this isn’t going to happen. So that means I need to change my perspective on the thing rather than expect others to change.

4

While I don’t have any chronic illness, I can appreciate what you’re referring to, conversation wise.

I was a caregiver, for 6 yrs, for my MIL, in our home. She was a large woman, weighing twice what I do, fully bedridden, on lots of meds, etc. My hubby and I were just doing what we felt was best for all of us. But adult diapers, mountains of laundry, 17 pills a day, and 6 yrs, made us look like heroic people, when we were decidely not.

As hard as it was, one of the most difficult parts, was dealing with exactly what you’re referring to. Whenever I went anywhere (not bloody often, obviously), I was the object of admiration for my stoicism, fortitude, compassion, blah, blah, blah. There seemed no end to it. And I always found it trying. It is nice to be recognized, as opposed to being ignore, for your ability to keep plodding along in good spirit, I admit. But I am no saint and did not like being viewed as one.

It felt like I was invisible at times, that people could only see my task, it seemed. It was getting so I didn’t want to go anywhere, meet new people etc. I realized that I would have to take the lead if I wanted to control the dynamic.

Unfortunately, there is no escape, it’s coming for you and you’d better get ready. After a few years I learned to just say, “Thank you, you’re very kind to say so!”, then move along, ending a conversation, the other intended to be more elaborate, clearly.

That’s what I recommend to you. Practice if you have to, “Thank you, you’re very kind. Of course everyone copes differently, I find, what works for me, is to not dwell on it. I hope you don’t mind if I choose not to speak of this again, thanks!”

Of course, I wish you nothing but the very best, and hope the news is not so dire as you are anticipating!

5

There’s an old expression, a problem stated is half solved.

Your problem is you haven’t even got it defined much less stated.

Your feelings are 100% legit but you’re putting the horse before the cart. You’re saying people are already asking you why you are limping. Are you telling them, “I don’t know”? Because their concern may not be why you are limping but rather why you’re not doing anything about it.

Start by taking first things first. Whatever you have, it is what it is. Knowing or not knowing isn’t gonna change that. What your going to find as you begin to cross things off your list, is you’re going to be able to do things about the things you can control and not worry about what you can’t

Whatever the diagnosis, people will be concerned naturally, but it will wear off. There will be questions and how you answer them is your business, but they will stop.

6

What about simply stating what you would like?

Thank you for your support/concern. I’m finding it best not to dwell on it; please continue to treat me as pre-diagnosis monstro.

If they have specifically offered help, you could add to the above: I will let you know if there is anything you can do to help, thanks.

7

Well, I don’t have a personal story to tell (I have a chronic, pain in the ass condition, but no one can particularly tell so I’m spared the questions) I witnessed a friend in the type of situation you describe.

I have a friend with MS - she recently had the liberation therapy which has basically eliminated all of her symptoms, however, before she had it she had many that were quite obvious. Her entire face and throat would go numb so she would drool and speak with a husky voice prompting people to ask if she had a sore throat, had a great deal of trouble walking, etc.

She and I were talking to a sweet, well meaning, but clueless mutual friend who is known for saying the wrong thing at the wrong time. She asked my friend with MS ‘Why do you even bother leaving the house if you feel so crappy - you could just stay in all the time and collect disability - you’re much stronger than I would be.’

My friend with MS looked at her and said ‘I live my life day to day just like everybody else. Somedays are good, some are bad, but I’m just a regular person same as you.’

FWIW I thought that was a great answer and Clueless Friend got the message and wasn’t offended or put out.

I think like everything there are people who will say stupid, but well meaning things. I think if you can come up with a catch phrase that means ‘That was stupid but well meaning.’ you can just trot it out at the appropriate time - you’ll need to come up with it yourself so it doesn’t sound weird when you say it.

8

You can say “Thank you. I’m doing fine now and am trying to maintain my independence, but of course I’ll let you know if there is anything you can help me with.”

9

Not my personal story, but I’ve seen:

people with Down’s or with physical disabilities being told “I don’t know how you do it!” and answering “same way as every other day!” There’s a woman at work who is on crutches and has evidently had physical problems since infancy; I saw her stare at the new coworker who asked and finally say “see, I’ve been like this my whole life, so what I don’t know is how do you do it. Me, I do it the same way I’ve always done it.”
a about-5-months-along cashier who, when a customer didn’t want her help bagging groceries, said “first I am pregnant not sick, second it’s my third time so I do know what I can and cannot do, third it happens to be my job to get this line moving as fast as possible - have a nice day!”
and “nothing right now, but I’ll make sure to let you know if something comes up” as a standard response to people asking “what can I do to help?”

10

I think I know where you are coming from, monstro. I don’t know if this applies to you, but I hate hate hate purely emotional reactions. They are worse then useless.

I get a lot of those on my forum for people who have had weight loss surgery. When someone on the forum posts a question or how they feel about something, what I want to do is offer them factual information that might help them further. If I can’t offer that, I keep quiet or just offer my generic sympathy and my best wishes.

But a lot of other posters respond with emotional support, or rather, what they think of as emotional support. They say what tehy would feel, assume you feel the same, usually accompanied by a lot of hugging emoticons and glittery pictures of cute cats.

I would hate that.

Basically, they tell me how I should feel about it. And I don’t do feeling well at all, so from the moment they’ve said that, we’re at cross purposes.

Then, besides having my original problem, I also have the additional problem of either feeling like an alien for having the wrong or too little emotions. And I have the additional problem of having one more person with whom I can’t have a frank conversation about what I actually am facing.

11

Nava, I must thank you for that answer. I’ve never heard it put quite like that and it could be very very useful.

12

Well, I certainly qualify with chronic diseases - I have 5 now and an assortment of syndromes to keep things interesting.

My problem is that 1) my diseases are for the most part invisible a lot of the time (relapse/remitting MS; Rheumatoid Arthritis -not presenting; Hashimoto’s Thyroiditis; Scleroderma - that is visible but is not debilitating; and some as yet unidentified vascular problem); 2) I work very hard to conceal how hard I work to conceal my issues.

It’s a weird Catch-22, because there are plenty of times when I wish someone would cut me some slack - but hang the man that tries to treat me differently due to my illnesses.

When I was first diagnosed with MS I joined a support board to find out more about the disease, and also to come to terms with how I wanted to live knowing I had a chronic disease. I do heartily recommend joining a message board specific to your illness. Folks there will assuredly be talking about how to react to outside comments and concerns along with other practical bits of information.

You may initially want to draw into yourself - to protect yourself - and to try to come to grips with your own new normal. That is a very vulnerable time and the worst possible time for others to find out. If you’re like me, you don’t want any special treatment or any fuss made. You could simply say, “I appreciate your concern but I’m not ready to talk about it”. After you are a bit more comfortable you can come up with stock answers that you can use depending on the situation.

Later, you may choose (as I did) to take the time to educate people somewhat. As my issues are less mobility and more sensory and brain function - I explain how that is a manifestation of MS also. You may choose to find a humourous response “Oh I’m limping from an old football injury” - or insert some exotic adventure. Some days I’m fine with well-intentioned comments, other days it’s way too much attention.

If I can be of any assistance to you (to vent, scream, cry, yell, bitch) - feel free to PM me. I am sorry that you’re in this position but very glad for you that you will get a diagnosis - sometimes the not knowing is far worse.

Wishing you well.

13

I have a neighbor with Parkinsons. The shaking in his hands is noticeable. The first time I met him, he stuck out his hand to introduce himself and then told me, very off-hand, that the shaking is caused by Parkinson’s. It defused the whole thing and I don’t even notice it anymore. I think that if YOU don’t make a big deal of it, most others won’t, either.

14

I have lymphoma (in remission right now, but incurable), rheumatoid arthritis, and fibromyalgia. I loathe people noticing me wincing or limping and fluttering about me. If anyone except my immediate family ask how I’m doing, I answer brightly, “Fine!”. When I went bald with chemo, I just kept working bald. I tend to use humor as my defense – in my closet at work where I keep my things, there is a picture of House taped on my mirror. (Vicodin am my friend.) If I am low-key about my aches and pains, so is everyone else.