I wondered if anyone here had the same problem and how you dealt with it.
I was diagnosed with Fibromyalgia and CFS a year ago after years of begging for a diagnosis with doctors (Could write another long essay about this, perhaps another time). I thought that getting to that point would mean I would something especially with my employer.
I am a IT consultant/project manager (basically I love coding but because I am a girl it's harder to be a respected programmer... another long rant about that, but maybe in another forum)
In August last year an agency approached me and spoke about an exciting job opportunity for the exact same job near my house. I thought this was fantastic as it would mean I don't have "to waste as many spoons" on the commute. The job involves two days travelling per week and I can claim back the time which I have taken travelling out of hour as holiday. They would prefer if I balance my week to 37.5 hours a week. there was even a mention that if you had to work late because of travel you were allowed to start later (after 10am). I thought this was brilliant because I could manage my disease with dignity.
I made a HUGE point that I had fibro and I didn't want to take the job if I wasn't allowed flexible working condition. I spoke a lot about it to the directors at the interview, my manager on my first day and it seems we wouldn't have a problem. So I left a job which was secure for this new job, thinking my life would be easier and I would have the dignity of being able to manage my disease without having to make a fuss about my condition. I was very clear!
Having fibro and still being able to keep a full time job is a matter of pride for me. Having to explain I am having a flare up to every Tom Dick and Harry at work and that's why I can't do this physical activity at work is soul destroying. I don't think I need to explain to you guys how it feels. It's so hard to be an independent woman but I am not giving up just yet. I thought this job will allow for me to keep my dignity and not to be reminded I am the girl with the invisible disability.
Boy was I wrong! To set the picture of the culture of my company, I was strongly encouraged to join the running club when I started. Once felt humiliated by a director (who knows my disease) who instead I used the stairs rather than the lift to get to our top floor office. I had to travel to a client for an all day training session, I wasn't going to jeopardise my work for him that's for sure. Our company is splitting in two offices and only offers us bicycles to commute between the two locations (Imagine the number of spoon I would be losing if I did that). Not too worried about the last one, I have a bus pass but I am just trying to pain a picture.
So it turns out my boss are health conscious (trying to be polite) and believe that a healthy amount of exercise will cure all. I was even told as such by a director. It's not like I am lazy, I walk 20 minutes every day. Do all of my stretches and I practice the mediations I learned in my pain management clinic. I do what I am told by my physio and she says I am doing well in that respect. she even said it is a credit to me than I am managing my disease so well. I exercise more than most people I know but less that they think I should. I don't even know why I need to justify myself. Basically, I try my best and I really feel my best isn't good enough.
I can live with being called lazy. From my experience the medical profession thinks we are lazy and it's all in our head (appart from my physio and the pain management team, they were wonderful to me). My loved one sometimes forget I can't always do what they need me to do. So why should my employer be better?
I had a good review and a pay rise, so I must be doing something right at work.
What bugs me is that I average 42 hours a week (a full half day extra work every week). I travel several times on Sundays and never had that time put back as holidays. And to top it all off, this week I travel to my clients on Sunday worked a busy working day on Monday, travel for 4 hours to the next client, worked a busy day again, travelled home for 5 hours, got home at about 21:00. I averaged 11 hours of working both Monday and Tuesday if you count the travel. Needless to say Wednesday I was entirely broken. I had no "spoon" to give. Missed my bus because I couldn't find my pass, ended up 20 minutes late at work. I was told off for being late.
What do I do? I know I am protected by law but I don't it to come to that. How do I overcome the stigma of having fibro?
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Feather
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Honestly? I have absolutely no idea. It would appear that the director is a bully. He is entitled to ask his employees to use a bike etc, but he cannot enforce it. I am quite sure that you are not the only person in the company having similar problems. Like you say, we have a hidden illness, and we want the choice to keep it that way.
Put feelers out to see if there is someone approachable in HR. Check your contract. If you are due time in lieu ask why it's been treated as unpaid overtime. Explain flexible working if you have to!! They know about it even if they pretend not to. Far too many bosses would be very happy to pretend it doesn't exist.
You're a strong woman. You have proved that to yourself time and again. Don't let this bully change you. You made the move to this company for a reason. Make sure you get what was agreed. I know you have it in you to sort this out. Your confidence has been knocked. Dig deep and find the fighter in you who has sorted much harder problems. You CAN do it 🐸
Thanks Sorebones, your words of encouragement means a lot
I have a strong feeling the policy is coming from HR and my manager. I thing the director are just not very aware of invisible disabilities and how to manage it. I guess my union or citizen's advice would be a good place to start to find out where I stand legally (Never hurt to know where I stand within the law). I will speak to them tomorrow.
Failing that try a specialist employment lawyer. He will know how to word a letter to your company outlining their responsibilities and compliance. It's a difficult thing to tackle when you're new to the company and don't need this hassle brought to their attention. After all, you just want to be able to be a productive member of their company.
Let me know how you get on. I'll be thinking of you 🐸
Sounds to me you do a lot even if you did not have FM.I don't know how to answer your question but I will say you are to be com ended on the job you do!!!Take care Peck🐤
Not only will they advise you will be able to support to attend any meetings
Their are rules and you should have a rest period of 11 hours between your shifts so if working late should not return to work till you have had 11 hours .
I sincerely hope that you are feeling as well as you possibly can be today?
I am so genuinely sorry to read of the work situation that you are in, and I sincerely hope that you can find some resolution and relief to these issues. I genuinely believe that you need to get more assertive with your work role. As working is in your contract of employment but joining a running club or cycling? Despite your employer knowing that you have Fibromyalgia, I am pretty sure breaches the ''Equality Act of 2010.
I fear that you may, at some point, have to use your legal protection to ensure your own safety and well being if you are coerced into doing things that you either do not want to do or simply are physically incapable of doing.
I want to genuinely and sincerely wish you all the best of luck, and please take care of yourself.
Fibro is a sneaky invisible beast. Your employer needs to understand what Fibro entails, print off some of the more factual literature available and give it to him, reminding him that your fully disclosed your condition at interview and they accepted you on that basis. They can't just sack you, and they are legally obliged to make reasonable allowances for your condition. Is there a Union there? If so, join it pronto.
They seem to be ignorant of their responsibilities under the Equalities Act. It is all very well them being 'Health Conscious' and encouraging people to keep healthy, but they need to understand that you are already unwell and can't take advantage of some of their 'Healthy' options. Many employers bank on their employees being ignorant of the Equalities Act and Employment Law, and will attempt to browbeat and bully their employees to try to get them to resign, DO NOT RESIGN. If you do you will lose the protection of the Equalities Act and you will also be unable to claim JSA.
Overdoing it in order to keep up with perceived expectations is not good for you, and the directors are not doctors, so should not be telling you to excercise more. That is not any of their business. As long as you are capable of the job, that is as far as your responsibilities go, their opinions are irrelevant. Don't be bullied, remind them of their responsibilities to you. You are in a strong position, You have been open and honest with them, now it is time for them to accept their duty to you.
That is simply appalling. Sadly, although you may have the law on your side it can be ineffective. When you stand on your rights sometimes they look for ways of getting rid - and will only realise too late what an asset you are. It's amazing what folk will do for spite. You have my sympathy, if not an answer.
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