I’ve got a new colleague at work who’s made some assumptions about me, mainly based on how old she estimates I am (that is a lot younger than I actually am…). Aside from me feeling a little exasperated by her brash insensitivity it’s reminded me how lonely it can feel to live with an invisible illness.

At one point, office talk turned to what time is bedtime and a comment was thrown my way by this colleague, “I can’t stay up late like you young people” (I was the only person under 50 in the room). Aside from the fact I’ve always felt more of an affinity with morning larks than night owls, I’m not a “young person” who can “stay up late” because I have disordered sleep that requires a strict bedtime routine that ideally starts 9/9.30pm.

This led me to think about what else people don’t really see, what do I have to do on a regular basis just to get by, to live, as normal a life as possible? Here are just a few examples of activities I do to manage my health:

• Weekly portioning out of medication (currently 7 different types, up to 30 tablets a day), counting and checking stock levels – running out simply is not an option!
• Monthly order and collection of medication – I can use a handy app to do the former but I had awful problems with a delivery service of the latter so currently physically go into a pharmacy to pick up my medication every month (or more often if I’m taking extra prn medications).
• Sorting out medication changes – recently upon collection of a regular prescription I was told the manufacture of one of my medications was locked. Multiple telephone calls and visits to the pharmacy later, I have a temporary prescription for a different strength (meaning I have to take 10 tablets instead of 4!) and will have to continue following this up until the manufacture is unlocked or a more permanent solution is found.
• Daily physio at home, regular session in the gym and regular appointments – everyone should exercise for its health benefits but in my case it’s vital I keep my joints supple and my muscles strong to limit pain. Unfortunately exercise is incredibly time consuming so it is something that I skip if I’m busy but I really shouldn’t – would you ever hear someone, on regular medication for a chronic illness, say “it’s ok, I’ll skip a couple of days medication, no problem”? No, we wouldn’t! So, equally, it’s not ok for me to skip exercise.
• Planning – I’m still learning this one! It’s really difficult to know how much energy I’m going to have in advance. I do know I can’t have back-to-back commitments all weekend and be fit for work on Monday. Making sure my diary is well balanced takes time in itself – sometimes I have to make sure I do things like cooking/shopping/cleaning in advance to take pressure off busy times.
• Attending appointments – time and again I’m exasperated by our health system being designed for people who don’t work. I was booking an orthopaedic appointment recently and when asked when would be convenient, I said “first thing in the morning, please”, thinking before work would be the least disruptive option. I was offered 11.40…need I say more?! At times, I’ve had to take annual leave for appointments, it’s been the only way to fit them in. Don’t get me wrong, I think the NHS is amazing, I just find it difficult when I’m penalized for being ill.

These are, of course, just the practical things I have to do – there isn’t really any accounting for the mental energy it takes to manage a chronic illness so I’ll just leave that thought with you!

I do not feel sorry for myself, this is my normal and I’m used to it! I just think it’s important not to judge someone on what you can see. Someone may turn up to work every day and to all intense and purposes look like a “healthy young person” but unless you know them, you won’t know what lengths they have to go through every day.

Please make a comment below if there are things you have to do regularly to manage your chronic illness.