Last reply 2 months ago
DMT and work

Hi all, hope you are keeping well and safe in these unusual times. I am newly diagnosed in March, first symptoms 18 months ago and 1 minor relapse 6 months ago. Other than that I am lucky not to have any symptoms of note. I discussed with my MS nurse DMT drugs early March and my neurologist recommended 3 drugs, of which I decided on Ocrevus. COVID then happened and everything was postponed. I have now been contacted and booked in for my first course in 2 weeks time.

After diagnosis and with COVID and no symptoms my life went on as normal, I could forget I had MS. I’ve only told a couple of family members and good friends. I’ve not told my employer. I have quite a senior job and it worries me that people will treat me differently and I don’t want to be different – I don’t know if that makes sense. I know it would be kept confidential from majority of staff but senior managers will know and I’m worried it will change things at work. But I’ve been told I need to either work from home or social distance for 4 weeks after treatment – so now I have to tell my boss? My work has put in place good social distance measures already – I am in a dilemma, should I tell work or not.

I’ve even thought should I delay starting DMDs? In the last 12 months I’ve changed my diet, I run regularly and feeling fitter than I have ever done so in my life!

I am definitely still in denial, I was offered counselling but said not needed. Is it time to get real? I am grateful my symptoms are currently mild, I really don’t want to come across as selfish, I guess I am scared of what the future brings and I am holding onto the past.

Sorry for rambling – it’s taken me 3 months to summon up the courage to post on here.

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charlotte_wright
2 months ago

Hi, and welcome to Shift!
I get where you’re coming from, with the nervousness of telling work and having other people know. I have found, however, people tend to treat you the same. My whole store knew when I worked at KFC, and the manager (a pr1ck) still had me work close-opens, and no one treated me any differently. I then moved to a call centre job, and I told my manager there too, and HR was involved. It was a good thing, I got my shifts altered so I didn’t have to work late nights or long days, and if I was ever off for anything to do with my MS, it didn’t count towards my sickness and absence. I’m my opinion, it’s always good to at least tell HR, and maybe the person above you. If it does get out, and people start asking what it is, I tell them that my immune system is attacking my brain (maybe with a little anger, if I dont really know the person). They usually leave it at that.
HR are good. You legally can’t be discriminated for a disability, and if people, who arent close to you or need to know, start mobbing you about it, tell them to shove it where the sun don’t shine. I’m pretty open about mine, but that’s mainly because I now use a stick.
I’ve also had days where I felt like sh1t and feel like my life is over, and cried for my future, but if you have someone who understands and can console you and make you laugh about the whole thing, it makes it better. If you need anyone to chat to, everyone here will listen.


vixen
2 months ago

Hello @newbie, bless you for waiting for three months to post! Welcome aboard. Sound like you are taking everything in your stride which is fab, and not least because you obviously haven’t got symptoms. First thing I’d say is – do not delay your treatment. That would mean you were putting work before your health. Nope How about a middle-ground; that of taking something that isn’t disruptive at all, such as Tecfidera? It’s really great that you don’t feel affected, but actually, your body has sustained damage already which has led to your diagnosis. Is your employer quite an enlightened and progressive company? I say that, because employment law is there absolutely to protect you. You could speak to your HR department in confidence; this would then really help if you did have to take time off for hospital appointments, or if you had a relapse. I told my employer, and had an Occupational Health assessment, who pointed out lots of reasonable adjustments that might be useful should I need them. That was two years ago and following my decision to cut down to part-time recently it was really easy to arrange that with my employer. Do you mind me asking how old you are? 🙂


stumbler
2 months ago

@newbie , the only predictable thing about MS is its unpredictability. What I am saying is that no-one knows how their future will pan out.

You’ve been advised that you have a progressive and degenerative condition. Nobody knows the course this will take for you. But, you’ve been offered the latest treatment, some may say the best. DMTs aren’t about treating where you are in the disease course, but to influence the future course.

Now, it’s possible that your MS will not progress. You seem to have a healthy lifestyle. But, no-one can promise that your MS will not progress. Ocrevus could therefore be seen as an effective insurance to slowdown the potential progression.

Hmmm, telling your boss? Well, you know him/her better than us. Once advised, they are legally obliged not to discriminate against you. This would happen in an ideal world……

There’s a couple of resources here which you might find useful :-

https://support.mstrust.org.uk/file/store-pdfs/Telling-people-WEB.pdf
https://support.mstrust.org.uk/file/store-pdfs/Working–studying-with-MS-WEB.pdf


newbie
2 months ago

@charlotte_wright Thank you, made me feel much better. It does make a difference to talk to fellow MSers. I talk to my partner and immediate family but I can see their concern so l don’t talk and then read everything I can find on the internet!
@vixen LOL, I am in HR! Thankfully I know my rights, sat in so many meetings with staff protected by DDA. Can’t quite get my head around being the one who will be referred to OH though 🤔 I am 52, female. First symptoms at 50. Double vision, pins and needles, numbness and tinnitus. I put it down to stress, convinced myself that my neurologist couldn’t possibly be right (yeh, really what do I know against the specialist!) when he said it was MS symptoms – until he showed me the new legions in my 2nd scan (12 months after my first MRI and 2 months after what I thought was probably a relapse) which really scared me.
@stumbler I like the dots….. that’s exactly my fear. I know I have to put my health first but I am so bad at doing that. I’ve worked incredibly hard to get where I am and it is the silent, can’t be proven discrimination, that I fear. But I may be fearing something that won’t actually happen. I have to learn to be more positive, I think that will come – especially with the support from this forum 🙂


vixen
2 months ago

@newbie, me too, diagnosed at 50 three years ago, female, first symptoms. And so we’re both MS Warriors through no choice of our own! 😀


sueh
2 months ago

Hi Newbie
Hope all is well. There is some really good advice here. I am in a similar situation to yourself. I am 50 and was diagnosed February this year just before the COVID outbreak. I had my first OCREVUS infusion last Tuesday and it all went well. Second part of the infusion is in 2 weeks time. Owing to my treatment and the current situation I did decide to tell my employers who have been very supportive. I think it is an individual decision. Good luck with your infusions. ☺️


newbie
2 months ago

@sueh thank you for your comments. I’m glad to hear your first infusion went well, have you had any side effects? Have you been advised to work from home / socially distance? I hope your second infusion goes well too. I did speak to my boss, it went well and he was very supportive. He will respect my wish for confidence, I guess at some point I will be ready to let some colleagues know.


sueh
2 months ago

Hi Newbie
I’m glad that your boss has been understanding which will be a great help. When the time is right for you, you will be able to share this with some colleagues. As of yet I’ve had no side effects from the first part of the infusion and so fingers crossed this is the same after the second part. Regarding work the neurologist has said for my employers to make sure procedures are put in place to enable me to maintain social distancing and if this can’t be done then for me to work from home. Another thing that Coronavirus has made far more complicated! Take care.


farmacista
2 months ago

Hi Newbie,
Am in total agreement with the other comments on here, I work in the healthcare sector and have always been completely open and honest with all my HR departments, as they should then make reasonable adjustments for you under DDA. I take Tecfidera, and it has made little impact on my life other than regular blood tests, and a change in diet to more immune boosting foods. I wasn’t offered Ocrevus as I didn’t want to go down the infusion route, but it’s a personal choice and you have to choose which one suits you and your lifestyle best! 😁


ruggermad
2 months ago

Hello @newbie

I was inured in a car crash at work 7 years ago (somebody hit me from behind me at speed) and the resulting neck pain / issues I experienced weeks after this event, eventually led to my MS diagnosis.
To cut a long story short my GP at the time and for many months previous, continually dismissed any health related issues I was having (Lhermittes sign, loss of bladder control, sensory issues in limbs, etc) as being anything wrong with me. In fact he pretty much said I was lying about the symptoms. It was only when I turned up at A&E the Doctor who looked at me thought I had a stroke and sent me for an emergency MRI scan. The results came back and showed lesions, etc. Then over the next 2 years I found a decent neurologist who over time and with my medical history, diagnosed me (hurrah!)

Getting back to the work issue – I had to disclose to work as I had a company car at the time and was driving as part of my job, the insurance company had to be notified. I wanted to keep my diagnosis confidential from my direct colleagues but found that the process which my company had in place at the time mean’t that multiple different people found out. The HR person told the facilities guy who then told the H&S guy, and so on, my “little secret” then got out at work.
I found myself in a position where I had a senior position in my field of expertise within the company, doing a job which “somebody with MS” shouldn’t be doing. There was a lack of awareness around MS in the workplace and people could not and DID not want to accept that I could actually continue with doing my role. It was a physical role and “work colleagues” judged for themselves that I was unable to do my job 100% (although I could)
I went to my manger in the first instance to tell him about my diagnosis and he was sympathetic but told me to “keep my mouth shut” as if HR find out the company will probably dismiss you. So I did, I never went to HR directly, I kept quiet, struggled on, got the looks of sympathy as I walked down corridors, had people laugh under their breath when I went for coffee and stumbled about, got accused of being drunk on multiple occasions, got ignored by many of my work associates and had phone calls unanswered and voice mails asking for calls back never returned.
Fast forward seven years and I now find myself in a sticky position at work, I am with the same employer in the same role, but with a new manager (my old manager retired). An unsympathetic manager and I continually find him trying to do his best to remove me from my position. He gives me additional tasks to do and is pretty much trying to move me into a completely different role at present with the hope that I quit my current job. I feel that he has been tasked by senior management to remove me.

I am currently off work at the moment and I am carefully planning my return to work. When I do go back I am going to ask my GP to put on my sick note that I would benefit from a occupational health assessment and a phased return to work. This way I am hoping that HR will have to get involved, I can then have a discussion and ask for reasonable adjustments for me to continue to carry out my existing role, (which will hopefully get my manager off my back about being forced into additional unfair work loads) which I could no problem anyway.
I will ask for as many reasonable adjustments as I can think off, sickness due to MS related relapses not being recorded or taken into account, “continue” to work from home which I have been doing on occasion, etc, etc.

At the end of the day, I guess that due to my emotional state at the time and being given the bad advice by my manager to keep my mouth shut about my diagnosis, things haven’t really panned out the way I had hoped with work. I wish that I did speak with HR about reasonable adjustments and how I could get assistance at work. (I can’t believe that nobody from our HR department has ever contacted me to be honest!!)

The thing to remember is, things are going to change at some point with your MS (hopefully not for the worst) , either you are honest and upfront from the beginning or you are going to have to go around hiding behind your diagnosis trying to keep it a secret, I have tried this and it is not that easy a thing to do.

Good luck and all the best in whatever you decide.
🙂


cameron
2 months ago

It’s hard to think about the future when there’s actually no apparent need to do so at the moment. I was dxd at age 53 and will shortly be 70. In 2003, the only drugs available were those now considered as less effective (copaxone and the beta interferons). I managed to keeping working for five years f/t in a senior management position with no time off except for surgery/recuperation caused in both cases by falls. But staying well involved a huge effort in terms of keeping fit, diet changes and the rest. All of this became so much easier when I retired and could spend longer doing the things that help the MS and avoid the work stresses that definitely didn’t. What I am saying is – if your goal is to keep working till retirement age, you need the best available drug and you need it now. No question. A lot has been discovered since my diagnosis: 1) brain damage is ongoing and unseen 2) the new drugs can stop/slow right down that process 3) damage already accumulated can’t be corrected. You feel 100% at the minute but damage is taking place under the surface (the iceberg analogy). If a stronger drug had been available to me, I reckon I could have gone on to 62. Make no mistake – MS is a formidable enemy.


jacqui_grose
2 months ago

@newbie. I would advise you to tell your Employer. The law can and will protect you but only if you tell them. Our condition is so unpredictable that it would be unwise not to say anything. You don’t have to send an email to all staff saying “Hey everyone, guess what I’ve got”. Your HR manager would be sufficient. If you’re thinking of going on Ocrevus, you will need time off for your infusions and potentially time off afterwards to recover (personally, I only needed one day but everyone’s different).
I only tell people at work on a need to know basis because like you, my symptoms are mild but should you get cog fog or fatigue at work, they will know why (and understand).

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