I recently started a new job (roughly a month ago) and for the most part it's gone quite well. I work under 25hrs per week (part-time), cos I don't think my body can handle a full-time job for the foreseeable future. Yesterday, around half-way through my shift I got very light-headed and needed to sit down for a good 20 minutes. I had a glass of water and with time the feeling subsided. This wouldn't be the first time I've felt this but most of the times, I can manage it without having to report it to anyone or take a break. When I spoke to the manager, he was very understanding but he is unaware that I have chronic illness/es. When I applied for the job, I hesitated to state any health conditions, because I thought it may influence my chances of getting the job (probably not the smartest decision) .
I'm currently waiting for my hospital records to be transferred to the city I'm currently living (I recently moved from Preston to Leeds). I was told records can take up to 18 weeks to be transferred to a hospital here. So far it's been just over two months but I haven't received any hospital letter from Leeds. I do have a GP here but I don't want to start asking for time off work when I've just begun.
I got a little teary yesterday at work, because of that incident. All I could think was “what if my boss/coworkers thought I was faking it and just looking for an excuse to sit down.” I felt like I was letting the team down. I should also state that I'm on a 3 month probation with this job, in which after that time, I will be reviewed and the bosses will decide in the job is mine indefinitely.
Maybe I'm redundant in saying this but I don't want my illness/symptoms to be burdensome to those around me. Being that I'm 24, people expect me to be so full of energy and more than ready to take on a lot of things. But in reality, there are many times that I just feel like an old lady.
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Vo321
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Hi Vo321. You don’t mention what Vasculitis you’v been diagnosed with or the medication that’s been prescribed?
As far as I’m aware you don’t have to say you have an illness at point of interview unless your specifically asked because it could affect the business health and safety guidelines.
I have small vessel pr3 positive ANCA vasculitis. For the last two years I've been receiving Rituximab infusions every 6 months. However, with me moving to a different city, my last infusion was in February of this year. I didn't mention having an illness at the interview but having started the job it's becoming increasingly difficult for me to undertake the tasks required of me without feeling unwell during my shift. I try to power through it but I dunno...
Work is such a challenge with chronic illness, my sympathies! You sound like a very committed team worker, which is great, but you have to look after yourself too. You’ve been very wise to take part time work, I have found being part time so helpful for fitting in appointments on my days off as far as possible, and have swopped my work days around a few times, when consultant appointments fall on work days. Your health is the most important thing. Hopefully you can get your records transferred very soon.
Thank you for the kind response! We say it so much but it's true; our health does come first. I'm slowly but surely learning that. I want to be able to say No to strenuous requests & not feel guilty about it, or at the very least, I want to be able to talk openly to those around me about how my illness affects me. I'm very lucky that I am living with my mother and together we financially contribute to paying bills. Rightly so, having days off will hopefully allow me to schedule future appointments around work.
I totally understand your frustration, I started a new job in March and had a similar dilemma. I am 25 and fortunate to be able to work full time as my vasculitis is relatively well controlled but it is a battle sometimes and I am always on edge about having a flare.
It is totally up to you to whether you tell your employer that you have vasculitis, but if you do tell them, as it is a long term condition you should qualify for support under the Equality Act. This means that your employer is expected to make "reasonable adjustments" to help you continue being able to work, and it gives you some legal protection (e.g. against discrimination based on your condition etc).
The definition of "reasonable" will vary a bit depending on the business, but for example if you struggle with mobility / coping with rush hour, your employer might consider letting you start work an hour earlier and finish an hour later. I suggest you have a think about what adjustments you think might help you e.g. being allowed to take regular breaks, being able to work from home (may not apply to you), flexible working hours etc and then speak to your HR rep and officially "disclose" your vasculitis. It might help if you print off some information from Vasculitis UK (the factsheet here is a good place to start: vasculitis.org.uk/wp-conten... so they can understand what your illness is and what it means for you. If you want to tell your boss as well, you can do, but you don't need to. HR are the most important people to tell. If you don't have an HR department, try talking to your boss as the company still has the same responsibilities.
I did not disclose my vasculitis initially, as I did not want to be treated differently, but have ended up disclosing it, as I now feel more comfortable about it. I was never explicitly asked if I had a health condition before I joined, only if I needed any adjustments, which at the time I didn't. For me, it makes practically no difference to how I am treated, other than I am given a little more leeway when it comes to taking time off for appointments and off sick, but I appreciate that other people may need more support than I do and this may not always be the case for me.
It might be worth calling Leeds hospital to check they got the referral information from Preston if you get some time. Unfortunately, it is not uncommon for referrals to get "lost in the system", but then suddenly reappear if you prod a little. Can you get a telephone appointment with a GP just to have a chat with them about it and see if they can chase from their side too? (My personal experience is that if you don't chase, nothing happens)
Having vasculitis sucks a lot sometimes (particularly the fatigue), but it is important to remind yourself of how much you have achieved in spite of it. If you keep having these light headed / dizzy moments, please mention it to a GP as it could be a number of different things (e.g. low blood pressure, low blood sugar, fatigue from the vasculitis etc) and they might be able to help and rule some things out.
Really hope this helps and you are feeling better
More information about reasonable adjustments and the Equality Act below*:
*Note that for legal reasons, you are considered "disabled" under the Equality Act if you have a physical or mental impairment and your impairment has a substantial and long-term adverse effect on your ability to do normal day-to-day activities
My goodness! Thank you for taking your time to reply with such an informative comment. Returned congrats to you also! It's amazing to hear that you are able to work full-time without vasculitis stopping you in your tracks. I feel you on the flare thing; what plays at the back of my mind whilst I'm working and I start to feel woozy is - "what if I pass out right now? how would people react.. that would be so embarrassing!"
Great point on the reasonable adjustments. I think I'll write down a list of the few things that I might benefit from in that regard. I had no idea that I could speak directly to HR about this without speaking to my boss. I will look into this and contact them at my earliest convenience. I think that would also make it easier for me when I may have hospital appointments or need sick days off; as they would be aware of my pre-existing health conditions.
Perhaps I care too much about people's perception. I've always thought because a vast majority of chronic illnesses are invisible, no one would believe I that I am sick, or similarly, they would assume that I am exaggerating my symptoms/experiences. I'm glad that you have not received judgement at your workplace. It's important to be in a place where you don't feel discriminated against.
I'm not sure what you mean by ringing GP. My GP has now changed to Leeds, so I'm no longer a patient at my previous GP. Maybe I can ring Leeds hospital but are they allowed to disclose that information over the phone without any verification? Also, there are two hospitals in Leeds so I don't know which hospital or department (for that matter) I would be ringing? I was thinking of calling my previous hospital team in Preston to find out how far with the process on their end.
Thank you so much for the encouragement. I will remind myself that the LITTLE I can do, is in fact, a HUGE achievement with the given circumstances.
You're welcome! Thank you. When I was first diagnosed, the impact on my career was one of my biggest concerns, so I wanted to reassure you that if you are able and want to work, it is possible. It's not easy and it is a lot of hard work to keep on top of everything, but I plan on continuing working as long as I can. I really enjoy what I do and sheer determination keeps me going a lot of the time. If my vasculitis picks up again I'll have to reassess my stance, but until then I will make the most out of it.
I did faint in a big meeting in my second week on the job which was very embarrassing 😂 Fortunately, however, 6 months later I am the only person who still remembers. (It ended up being medication related and hasn't happened since). So if something similar does happen to you, it's not the end of the world, and people will forget about it eventually. The mortification will pass! I carry some crisps or chocolate and water with me in case I feel woozy and they normally sort me out.
That's definitely a good plan - I did a lot of research into it when I was trying to decide whether to tell them when I joined or not, and most of it is just about making them aware so they can give you the support if you need it. The end goal for everyone is to keep you in work if you can and want to be there.
I feel that too which is why I initially kept it under wraps. It was hard to hide though when I got the office lurgey (which took everyone else out for a week tops but I had it for nearly 2 months) and it was actually some of my colleagues who pushed me to see a doctor as I couldn't remember how long I had had it. When I told them afterwards that I have an autoimmune disease, I got the same lecture that my mother and the doctor gave me, lol. (I am trying to be better at keeping track of symptoms to avoid that happening again because we do need to look after ourselves). You might be pleasantly surprised at some people's reactions, but equally if you don't want to tell anyone, you don't have to. I hope you find your workplace to be equally supportive. If anyone does treat you differently, please report them to HR.
If you can't find the time to go in and see a GP at your new surgery to get them up to speed with your records, you might be able to get a telephone appointment with one. Essentially, because we are non standard patients, it helps the GP out if when you join the practice you book an appointment to introduce yourself e.g. "My name is X an I have vasculitis. I have recently moved from Y area and was being seen at the rheumatology clinic at Z hospital by Dr W. I am taking this medication and it was being prescribed by these doctors for these reasons (it helps if you can write them a list). My vasculitis care was supposed to be being transferred to the hospital here, but I haven't heard anything and don't know who to chase. Could you please follow up on this for me on my behalf?". Otherwise, I find I end up wasting three quarters of my first "proper" appointment explaining what vasculitis is, when I only came in about getting a prescription.
Checking in with your old hospital to find out to whom and which unit they sent the referral, would also be a good place to start. If you can do that first, before speaking to the new GP, it would help them out a bit.
You're welcome, don't be too hard on yourself! Make sure you take some time out every now and then just to remember how far you have come
I love hearing/reading stories such as your own. I truly admire your tenacity. Luckily for me, my workplace provides beverages free of charge but I think I'll get into the habit of carrying a snack around with me to eat if I get woozy. I'm happy to hear your colleagues took an interest in your wellbeing. Thank you ever so much for your response. xx
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