Disclosure seems to be the theme of many MS strands at the moment, so I thought I’d add my two-penn’orth. My only advantage is greater hindsight as I was diagnosed with MS 28y ago. More than half my life has been lived with the diagnosis and it is fair to say that it has influenced every single aspect of my life. Recently, I started to reflect on what that has meant.
Some insights are very gratifying and others are very hard to even think about. MS has alternately made me a much better person and, at times, quite the arsehole. I want to blame the bad times on the MS but I think it was in me and, at best, I can only involve MS in my rotten deeds and not blame it all on it.
However, there are things I am extremely proud of that offset the episodes which make me cringe and I take comfort in the knowledge that there are far more of the former than the latter. I’m 52 now, so a fair amount of time has passed and it turns out that the cliche is true. Time is a great healer.
What I am really saying to you is that it takes time to come to terms with your MS. I wouldn’t say I welcome it into my life but I am comfortable with its presence. The issue with disclosure, especially when it is all new to you, is that you need to jump ahead a bit so that you can ensure it is not frightening to others.
While you remain afraid of your own MS – and it makes perfect sense to be frightened of it; like skydiving is naturally concerning the first time – you’ll find it extremely hard not to communicate that fear to other people. Whether they be someone you fancy going out with or working for it will be the same, your fear leaks out. We’ve all seen it in others or experienced it ourselves. You can’t help but betray your anxiety. I am still petrified of bloody wasps (what IS their point?) and swat and wave at them. I then get some smart alec saying, ‘They can sense your fear’. This may be true, but I’m petrified of the damn things and it is a very rational fear in my mind.
So MS and disclosure? What useful addition to the discussion can I make? It is blunt so brace yourself. You need to get a hold of your MS and how it sits with you. Until you can stop being afraid of your MS it is very difficult to avoid communicating that concern to others. Whomever they may be.
I resolved from Week Two to just plough ahead with life as I always have. If something has scared me (apart from wasps) I have confronted it head-on. Skydiving, big drops when skiing, hard climbs on the bicycle, scary climbing moves, dealing with aggressive idiots etc. the more you do this, like anything, the easier it becomes. In this case, it is managing your own fears.
So I urge you: get therapy of some kind. See a professional, chat it over with your best friend, join a group (shift.ms or esupporthealth.com), go bungee jumping, come out using a video on LinkedIn (As my mate did recently. Six mo. after her diagnosis she owned it so no one else could put their spin on her story) but confront it, accept it and cure your fear of it because ‘it’ ain’t going anywhere.
This is so true. It takes time to adjust to MS and the constant losses it generates, to learn how to adapt to a different body, different expectations. I still overcommit and then pay for it but I plan for down times and I know this is the way I choose to live. It gets tiresome but counselling helps.
I tell everyone who gets to know me I have MS – not to gain sympathy, but to let people know that MS can present “my way”- cognitive issues masked by a fairly capable body, overweight caused by exercise limitations and boredom when tired, etc. Everyone seems to know someone with MS but the disease is so variable I feel I can contribute a vision of someone doing the best they can. Or not, depending on the day…;-)
Over the years my family has been hit by an overload of wicked problems
The addition of another MS diagnosis would be a disaster. Some fragile people would be tipped over the edge.
(That’s my reason for not coming out.)
Close family were told straightaway. Others got to hear on the grapevine. I never told work (except a few close work friends). I left work (medical retirement) 13 years after my diagnosis and in my early 50s. My boss of 3 years said he never knew (I never told him). I’m a private person + I hate fuss + I hate to be treated differently. My approach was to keep it quiet – I didn’t want to become Mr MS. I still hate it when my wife speaks to her sister (who lives far away) and I hear my wife say “he’s not too bad”. All you become is a disease / the disease if you are not careful. I steered away from local MS Society meetings / creating a blog etc. I visit websites which are science based. I went to a counsellor session once. When she said that “I needed to embrace disability” I said F off and left. I’ve never felt the need to disclose that I have MS. I’ve had two lives – preMS and postMS. In my postMS life I keep it to myself and deal with it internally.
I totally agree. One year into diagnosis I was outside M and S and saw a line of wheelchairs. In each sat a woman with a begging bowl. It was the local MS Society. I ran a mile (figuratively speaking!). I refuse to become the illness, but there are times when you feel some people would like you to. I have lost old friends, for whom I presumably became too needy but it doesn’t matter because I like the new ones more. As Churchill said ‘ keep buggering on’ .
I understand this response. I hate other people making MS my definition, or anybody’s. Keeping on is the only solution until it is over.
I don’t tell people of my MS, it’s one of their business. No one knows at work, just like I don’t ask my colleagues about the ins and outs of their health. We are all getting older and we would be hard pushed to find someone in their 50’s or 60’s , whos never had something wrong with their health. Most of my family and friends have had health issues, be it severe anxiety, depression or physical illnesses and conditions. It’s part of life.
I used not to tell people of my MS but as my husband ignored me and told people, it was hopeless. What I’ve noticed is that, now, when I say I have MS, nobody ever seems to take a blind bit of notice. Maybe they think I’m telling porkies.
I could write a book on this.
In my experience (and others I’ve observed) disclosure can and does harm people sometimes. For example, there are real consequences to sharing at work and I know others that had landlords, acquaintances even “family” and other general arseholes somehow take advantage of the information. Then there are the “friends” who simply ghost you because of their discomfort with illness.
Disclosure has real world consequences must be considered very carefully. You can never undo it once shared, but in the reverse you can always choose to disclose later.
I echo ms in US sentiments. Consequences I’ve encountered Too lengthy and complex to detail. Rhetorical: why do you suppose desk administrative job descriptions in US often include requirement that one can lift 40 lbs, stand, stoop, bend, for long periods? What is the health insurance risk/cost assesment to a company in US that employs a pwms on dmt? Is reliability a concern to an employer when looking at an applicant with MS? Can co-workers understand daily variability or instead find it easier to believe a pwms is a slacker? Is it difficult to find the right words to support a friend with MS who struggles each and every day when you remember and grieve the person your friend used to be?
Bungee jumping! What a great idea — I never thought of that, as an alternative to running, karate, walking, all of which I had to stop, one by one, over the last 10 years.
Bungee jumping: I’ll check that out with Prof G first, though.
Rush of blood to the head. Be careful.
You failed to notice the irony, Dominic. Uphill cycling won’t work when you can’t get on the bike because your legs are too stiff, and feet slip off the pedals. The same applies to the stepper in the bedroom. It takes 5 min to get 5m with a walker, putting the brake on each move, using full concentration to balance whilst bending down to hook the leg and tug it forward. This kind of problem will no doubt be familiar to many with ms. Sometimes it might be polite to let others know why you are so incommoded when they have to witness the spectacle, particularly if they are holding a door open. Also if you have to piss out in the open, that you are not just being disgusting.
This is not a question of attitude or defeatism, or asking for sympathy.
An enlightening read Dominic, the gist of which can be applied in many areas I think. I learn something with each of your writings.
Why bother? For people cares of you, I don’t want to give them a burden of just understanding such a terrible disease. For people who doesn’t care, there is only down side. I couldn’t help to seek help but learning it slowing this is a stupid bad idea.
I’m glad it worked for you and you are at peace now. Maybe given enough time I will be the same. But where I am the very limited disclosures all ended up in regrets. People all have their own struggles, it is in the best of interests of friends, family and ourselves that we act as positive as possible and all act to live in a fairland, with MS or not.
Disclosure may work for some but please don’t encourage it, many of us learned it the hard way.
Thanks for sharing this. I think there is a burden to not disclosing too. And that burden is carried by the PwMS. The constant pretence, hiding of symptoms, pushing yourself to appear normal/functioning. We live in a disability discriminatory society – we are kidding ourselves to believe differently. But I believe that ‘coming out’ is the only way we can challenge society and alleviate the burden on ourselves. ‘Coming out’ for me revealed the bosses, co-workers, friends and family who were self serving and never there for me. Would it have been better to have kept MS to myself and continued to believe in those relationships? I think not.
Interesting and valuable post Dominic that facilitates PwMS revisiting this issue, or perhaps even considering it for the first time.
This is beneficial because I allows each of us to remind ourselves of our individual rationale for the positions we hold regarding disclosure, and of course, we might also shift our perspectives to one that better suits us currently.
I’m in the Always Tell Everyone camp, but I’m grateful for the replies from those who’ve chosen not to disclose, because they’ve provided me with insight into the very valid reasons they’re not told others.
We’re always being told how different MS can be, as we each experience it, and so it’s legit to respond to it differently too and that any rigid expectations of how we should react are therefore unreasonable and unfair.
For myself it’s the shocked, concerned and even negative reactions to the fact that 6yrs post diagnosis I don’t know anyone personally who has MS.
This site is the way I’ve chosen to connect with the MS community – best thing I ever did – finding the Blog😀
Fi – I complete agree with everything you said and I am also in the Always Tell Everyone camp, but understand why some individuals might be hesitant to disclose.
This blog is the best resource I could ever find and has become my unofficial MS support group. Nice to hear others feel the same way.
In hindsight (35 yrs), and I say these “from my own experience”, meaning I’m not telling you what’s good for you- The author is correct by suggesting not to disclose to others until you can deal with it well yourself. That’s because you may have to help the other person deal with it too. Then you’d have two people sort of bouncing around, perhaps into each other. Hopefully that other person is not a boss who doesn’t like you anyway, or a potential partner who’s looking for surety and predictability and something to be counted on, in part.
My friends all took it good enough. I never asked them to help me (usually), as I helped myself first (whatever it took), and they saw that. If I did ask for help, they did what they could do. If I had a sense of humor about it, so did they.
Hardest was, again, a job in a particularly competitive environment. Came a time when I had to explain limping and slurring of speech, as I knew more symptoms might be coming and I had to break the ice. At the close of the conversation, the boss said “Now go out there (the offices where the co. was housed) and tell everyone”. I did, and most supported me, except those who already felt intimidated by my presence. It was a bad idea of his, to order me to disclose. …had something to do with our line of work. Nevertheless, eventually they got sued (deep pockets; in-house social-psy consultant for a large US bank). In hindsight now, I settled for less than I should have.
Told my mother. Her sister freaked out at me. The other sister said I did the right thing. My mother passed, and the one sister told me, in part, it was my fault for disclosing. Her behavior shocked and disappointed me, but it wasn’t an isolated event of her lack of empathy and judgment.
Potential partners, eventually worked out fine for me, but I had to look out of country, to someone who also saw a gain in coming to the US. She is my best friend now. I am good for her, she is good for me. Nothing made it more clear than MS, that at least here in the US, for a majority, relationships and partnerships when in “dating mode” are a financial search. You can be the best person in the world, seem attractive to the other party, and it means nothing unless you are financially viable. Said inversely, you can look like crap, be interpersonally caustic, but have financial resources, and you are a “find” to your potential partner. Things won’t add up to determine the quality of the relationship, for a while. My calculations on this could all be different with the guy or girl from down the street.
Conclusion? (And I too could write a book), get your interpersonal MS stuff in order before you disclose. Be prepared for interpersonal hardship nonetheless, as you come to terms with all the other things MS means. Then disclose if you can project it has a decent chance of helping the situation. Therefore, always be open to failure.
Dominic, Like disclosing, your posts put you in a vulnerable space, but also allow you to be authentic. Thanks for sharing your voice. It raises an important topic.
I have regrets in telling the friends I have if my MS. I informed two friends not to tell anyone, including our shared friends. Unfortunately, they couldn’t keep it to themselves.
One day a shared friend asked me what I’m doing with my life, I responded a higher education course on autoimmune disorders, she responded “that’s understandable”. I didn’t inform her of my health condition. Some people really just can’t keep things to themselves, it’s juicy gossip!