I saw and responded to a tweet about #thecostofbeingdisabled and I just wanted to turn my thread into a more detailed blog post. I want to show people (both able bodied and disabled) what I go through personally, because none of us are the same. My list wont be the same as another disabled or chronically ill person’s but there will be many overlapping experiences. I wanted to write this and create solidarity among disabled and chronically ill people. Share what you go through.
restricted diet: branded vegan or free-from foods are more expensive. replacements for milk and butter are often more expensive whether it’s lactose-free or a plant-based replacement.
extra vitamins and medication: to make sure I do not become deficient due to my gut health and restrictive diet. Turmeric for inflammation, coconut oil tablets for healthy fats, vit c to boost immune system that I don’t have, multi vitamin, magnesium as it is in most inner body functions and many people are found to be deficient. I currently take something like 10 different supplements. I also pay a lot for paracetamol and rennies (deflatines) to help with pain and bloating, and before fully giving up lactose I used to buy lactase enzymes too. These can cost anywhere from £3 to £20 a packet or bottle.
Homeopathic: balms and oils for pain relief and help migraines(£3-£5), CBD products(£5+ depending on item), sports injury products and supports, k tape, chinese medicines and patches. Massage therapists, chiropractors, osteopaths, acupuncture, because NHS staff are no longer hands-on and to get some immediate pain relief and relaxation you must go private. They are anywhere from £10 to £60 depending on what they do and length of time.
Walking aids: different walking sticks to suit occasions, I have a nicer looking one for nicer occasions(£20), I have a couple of fold up ones in case I may need it later in a long day or travelling, gifted to me by family. Driving everywhere as public transport isn’t always accessible, driving to many doctors and hospital appointments, support groups etc. to fill my tank is £60. Heel pads/insoles in my shoes and having to spend more on better quality shoes. I also have been told to buy gel heel pads for my Plantar Fasciitis.
Having a backpack full of ‘just in case’ supplies. Gives me a bad back but I often need everything in it.
Using a heater at weird times of the year because my body temperature is a struggle. Bad circulation in hands and feet and often need heat pads, hot water bottles, electric blanket to warm up. Getting night sweats, needing to turn heating up or fans on to try and neutralise this.
Glasses with screen protect gloss or sunglasses because my eyes are sensitive to light and can have migraines. These often come at an extra price and not really packaged in. Also just needing to get my prescription updated more often than most people, losing glasses so ending up with many pairs that all need updating even if they are the spare pairs. Contact lenses too, you can’t take back and get money off for unused contacts, that’s something they should look into coz I have loads the wrong prescription and can’t really use.
Toilet roll, water costs, and baby wipes and other single use items like cotton balls or pads. Washing underwear a lot or regularly replacing it from having crohn’s. I now have Adalimumab injections that often require a cotton ball to soak up the slight bleeding after. More focus on oral/dental health as this is often the first place for bacteria and infection, so electric toothbrush heads and floss are important.
Testing different at home equipment that may or may not help for the hope of some pain relief. Memory foam pillow and mattress, many pillows. The possibility of replacing the mattress more regularly because you spend a lot of time in bed, in the same position.
Brain fog: notebooks for writing notes and lists for myself and others to try and prevent forgetting to do or tell someone something. Having multiple because I lose them.
Paperwork Organiser: files of all shapes and kinds and colours with labels so I know what is where.
Buying self help books: mental health guides, therapy guides, memoirs or biographies about people who have dealt with similar health conditions so we feel less alone and more educated. Books vary in cost from pennies second hand to £30.
Buying other products suggested to help something going on with you because you’re so desperate. After having Erythema Nodosum, I had discolouration all up my legs and on my elbows that looked like bruises. I used caster oil with lavender oil on them regularly as these are meant to be a natural lightener. To be fair… I think it kinda worked. My legs are looking nearly entirely back to pre-Nodosum.
Needing some kind of home staff like my family personally have a cleaner (some people have an need personal assistants which have slightly different job roles etc.) because I cannot change my bed sheets or regularly clean any part of the house it will always be a half done job and wipe my energy levels out entirely so a cleaner for a few hours once a week has been a game changer for me and my family.
Emotional and social costs:
Not being able to just go and enjoy a meal out or at a friend’s house.
Losing use of my dominant arm, stopping me from being able to type, write, wash myself, cut food, feed myself, opening bottles or jars, swimming, exercising in general.
Not being able to live alone. Needing someone to care for you, make sure you are fed because you cannot cook for yourself often. Helping you keep clean and keeping your rooms and clothes clean, because changing a double bed is a lot harder than you think. Also I don’t receive enough money from PIP to live alone and don’t make enough from any of my money earning ventures to cover those costs.
Never knowing if your symptom is normal, part of something you already have, a cold or the flu, or something else entirely. Always stressed about what these could be or what could happen.
Never knowing if or when it will get worse and what ‘worse’ means next time.
Trying to buy accessible/disabled ticket for gigs and events can be really difficult or nonexistent. Wasting many hours chasing people, researching, making phone calls, just so you can try and comfortably enjoy an outing. (Me, crying about not getting MCR tickets because the phone line didn’t actually work for ages I was on that phone for several hours before I got a ticket and a carer ticket)
The anxiety of having to be reassessed for PIP! This is awful to go through and you have to keep going through it even though most people on PIP have chronic conditions that will never be cured and are very unlikely going to get better. But they put you through it every few years and often deny you, make up absolute shit, and deny you it and you have to appeal and wait even longer and go through even more stress!
Your version of the future changes with each new symptom and condition.
Medications and illnesses causing physical changes like weight gain or loss, acne or facial inflammation, the bruise discolouration I had on my legs, hair loss, teeth problems, etc. making it difficult to feel good in yourself.
This list will vary with each person. This list is also probably incomplete because it is impossible to remember everything that you’ve lost or sacrificed especially when you want to focus on maintaining the level of health you currently have. There are people who would wish their disability or illness away, and there are people who wouldn’t, and both of those are valid and acceptable. Not everyone is the same, but able bodied people often don’t see what disabled and chronically ill people go through on the daily. I just want to help open some eyes.