The costs of chronic illness and disability are many, and coupled with the overall lower income and higher unemployment rates of the people who fall into these categories, they take a huge toll on many lives. Some of them are more well-known, such as the high cost of a specialist appointment or surgery. However, there are many other “hidden” costs that you may not know about if you or a loved one has not had to deal with them. Today we will take a look at the hidden costs of chronic illness and disability, and the cumulative effect that they can have on people who live with long-term health challenges.
While some of the more obvious examples of adaptive equipment may be covered by insurance, (eg. wheelchair, crutches etc.) there are also numerous lesser known items that people with chronic health challenges may need. Things like special chairs, cushions, adaptive kitchen equipment and body braces are not often covered by insurance. It is also infuriatingly common for people to be denied coverage for much needed items because they don’t meet stupid criteria. For example, I was denied coverage for compression stockings because I “haven’t had a thrombosis yet.”
Adaptive equipment to adapt to your adaptive equipment
*sigh* I really wish this was a joke, but it’s not. While I’m sure that there are other examples, I mainly noticed this problem when I took up use of mobility aids, and realised the sheer amount of extra things I had to purchase out of pocket just to comfortably use these tools!
When I started using crutches, I quickly realised that I would need to purchase soft coverings for the handles and elbow supports to prevent bruising. I also realised that I would only be able to wear cross-body bags if I was traveling by myself, otherwise I would have no way of accessing things like my phone or transit card without help.
When using one cane or a crutch at home, I was also relying on being able to do things with one hand, which has meant re-organising my apartment and purchasing certain storage solutions.
Similarly, when I started using a wheelchair part-time, I needed to buy a special cushion and wheelchair gloves to protect my skin and joints. Realistically, I will eventually need to purchase my own ramp for long-distance travel too.
I can’t speak for the rest of the world, but at least in Belgium there is no reimbursement for supplements, even if they are deemed necessary by a doctor. Many people with chronic illnesses are not able to get the recommended amounts of vitamins and minerals through their diets, and some may need a far greater amount of certain minerals than normal (for example, POTS patients who need extra sodium, magnesium and potassium).
I personally have to pay out of pocket for L-Carnitine supplements in order to have anything approaching a normal level of muscle strength. I also take vitamin C and Quercetin as natural treatments for possible MCAS, glucosamine for joint and cartilage strength, and a whopping 3 grams of magnesium everyday, just to keep my blood serum levels within the normal range. This costs me more on a monthly basis than all of my prescription medications combined.
There are many reasons why someone may need to follow a more expensive diet. Food allergies and intolerances may significantly restrict a person’s diet, and cause them to rely on preparing 100% of their own food from scratch, which can be more expensive to maintain. People with certain gastrointestinal disorders such as Gastroparesis may have to follow a liquid diet, or even under go tube feeding, which requires complete dependence on expensive – ready made food products. People who live with chronic fatigue or reduced mobility may also rely on pre-prepared meals or expensive meal-alternatives if they live alone or wish to maintain a higher level of independence.
Did you know that many insurance providers only cover certain hormonal contraceptives, even though the “standard” ones are not safe or effective for some patients? Many people find that certain hormonal treatments induce side effects or worsen pre-existing conditions that they have. Others may not be able to safely use certain hormones due to bleeding disorders or conditions like progesterone intolerance.
Furthermore, conditions like Pre-Menstrual Dysphoric Disorder, Endometriosis, and Menorrhagia, have hormonal contraceptives as a first line of treatment, but it is often necessary to try many different options before one that works well with the patient’s individual bio-chemistry is found (I am currently on my 8th!). In the process, many people are forced to repeatedly pay out of pocket for boxes of pills that they will never finish.
Many people need psychological support over the course of their lifetime, and people who live with a chronic illness or disability are no exception. Even if an illness is not mental in nature, there are many reasons as to why it may require psychological intervention, such as medical gaslighting, traumatic experiences, discrimination, chronic pain, dramatic life changes, and feelings of isolation and depression.
Unfortunately, in many countries, the cost of psychology is far too high. For example, my public health insurance fund (which is one of the better ones) reimburses a maximum of 15€ per psychotherapy session, for up to 16 sessions per year. This is very minimal given that the average session costs 70-100 €, and most therapists will recommend a sessions every 1-2 weeks, leaving you with 10-36 sessions a year with no reimbursement at all.
I think we can all agree that this makes psychological help inaccessible or at least very burdensome for many people, especially for those who have limited income or a higher cost of living due to chronic illness or disability.
This issue becomes even more upsetting when you consider the fact that many people with chronic illnesses are “held hostage” during the diagnostic process, with accusations of having psychological or psychosomatic illnesses. Many doctors will refuse to investigate physical health issues further until the patient has undergone a psychological evaluation, and others will not prescribe pain medication unless the patient has “tried therapy” first.
Alternative and emerging treatments
Many chronic illnesses are poorly understood and still in the process of being researched. As such, there may be few effective mainstream treatments available. Patients may also turn to alternative treatments because of intolerable side effects from their prescribed treatments, particularly in the case of pain relief.
While the level of insurance coverage for emerging treatments is improving in some countries, it still lags far behind patient needs. For example, I use CBD for muscle spasms and migraine relief. Consumption grade CBD retails for around 30-60€ per 10ml in Belgium. There is no insurance coverage for it, as it has still not officially been legalised (even though some doctors already prescribe it).
Along with CBD, there is emerging research showing the pain relieving benefits of alternative treatments such as acupuncture and osteopathy. Although some insurance providers may provide partial coverage for these treatments, there is unfortunately still a general lack of recognition as to how vital these treatments can be for people with rare illnesses, when few other options exist.
This is probably the one that irritates me the most on this whole list! In Belgium, you have to prove that you have suffered a minimum of an 80% PERMANENT loss of function in order to qualify for access to adaptive transport services, such as a wheelchair friendly taxi!
While some of the train and bus services within Belgium are equipped with disabled access features, many are not. Features such as lifts and wheelchair level buttons are also frequently in disrepair. There is also the fact that due to the cobblestones and undulating nature of Belgian streets, many people may not be physically capable of walking or rolling the distance between their stop and their destination, even if it is short.
There are SO many reasons why a person may need access to adaptive transport options without having lost 80% of their functionality (whatever the hell that means!). They may be an ambulatory wheelchair user with a great deal of independence, but still need to travel with their chair sometimes. They may have balance issues and not be able to safely catch the train alone. They may have severe Chronic Fatigue Syndrome and not be able to walk more than a few steps without triggering severe symptoms. I also want to mention that we desperately need accessible transport options available BEFORE we are diagnosed, so that we can actually get to our diagnostic appointments safely and without making ourselves more unwell.
In this final situation in particular, the cost of taxis or Ubers can really add up and cause an unfair financial burden on patients, who are just trying to do their best to make progress, even though they may not have access to appropriate pain or symptomatic relief measures.
Despite all the progress that I have made over the last year, this is still something that I really struggle with, and I still have to have a monthly budget for emergency Ubers. However, I have to use this sparingly, and sadly transport continues to be one of the main barriers to enjoying life the way I would ideally like to.
Unfortunately, many people still assume that disability = free money. There are many things wrong with this way of thinking, but I’d like to start by saying that while illness begins before diagnosis, the social security does not. In fact, in many cases it does not begin until many years after diagnosis… if at all.
There are many disabling conditions that are not yet legally recognised as disabilities, and most medical systems fail to take into account the cumulative impact of having multiple “smaller” disabilities, and do not consider this to be a sufficient reason for needing support. The process of applying for social security payments (even temporarily) can be extremely long and dehumanising, and the situation is often further complicated for people who are immigrants or self-employed.
Even if a person is successful in an application for social security, they may not even receive enough money to cover the cost of their treatments, let alone anything else. In many countries, if the person has a wealthy parent or partner, these benefits are reduced or eliminated, leaving them without independence or autonomy, and exposing them to potentially abusive situations (a topic which could be a whole other article in itself!).
As a result of this, many people who are forced to stop work or work reduced hours due to illness or disability are left to eat up their savings or go into debt for long periods of time. This is especially cruel when you consider that they will likely need to undergo a barrage of expensive testing and treatment if they want to become well enough to return to work, OR to gather enough documentation to apply for social security payments.
The bottom line
I hope that this article sheds light on the fact that just because a person has insurance or can afford medical treatment, it does not mean that they are not struggling financially or emotionally with the costs of their care. Even people who are lucky enough to make an excellent salary or have a solid support system, may find themselves having to make large sacrifices in order to pay for the treatments and lifestyle changes that they need.
It’s important to keep in mind that a disabled person who appears to “live well” (eg. keeps a vegan diet, takes yoga classes, has acupuncture etc.) may be prioritising certain things above all else to improve their health, and may not have much spare change left-over for other things that you consider as “fitting” with this lifestyle, such as travel, eating out, or chipping in for your cousin’s expensive Christmas present. Never pry into the reasons as to why these things aren’t possible for them, and try not to take it personally if an offer you make gets turned down – you never know what someone else may be going through.
Unfortunately, there also still seems to be a narrative that there is an endless supply of new treatments readily available to people with health difficulties, and that if they would simply “knuckle down” and try new things, they would be able to find a cure or effective treatment for their ailment. While there are many reasons as to why new or alternative treatments may not be accessible or appropriate for some patients, the financial aspect of this is often overlooked.
This article has only just scratched the surface of the multiple systemic issues that make recovery or effective symptom management difficult for many people with chronic illnesses, and I urge you to think about this the next time you are tempted to dismiss someone for not “trying hard enough” to get better.
What can I do to help?
Aside from the advice above (AKA: don’t be a d*ck), there are a few things you can do to be a disability ally and help ease the financial burden on people with chronic health challenges.
You can start by voting for political parties that prioritise equitable, heavily subsidised or universal healthcare. You can also contribute to petitions that address specific issues to do with the costs of your local healthcare system. Keep an eye on any new health related bills that may be being passed by your local parliament, and ask your chronically ill and disabled friends what they think about them. If it is an issue that they have strong feelings about, suggest that you sit down together and write to your local representatives about your views.
If you have the means, you can offer to shout your friend a meal or ticket in advance the next time you invite them out, so that they don’t have to worry about disappointing you if they can’t afford it. You could also offer to meet them close to their home or pick them up so that they can save on the cost of travel.
If you are planning on buying them a Christmas or birthday gift, try to get them something that they really need or want; you could even consider asking them if they would benefit from something like a meal delivery or cleaning service.
Support disabled creators by paying them for their work and and by using disabled-owned businesses and services. You can also support these endeavours via non-monetary means, such as by subscribing to and sharing their content on social media platforms to help them gain traction.
P.S if you are a disabled business owner or service provider please contact me! I would love to start amassing a directory of businesses for the website.
Which hidden costs of chronic illness and disability did I miss? Which ones irritate you the most!? Let me know in the comments below!
Fancy helping me with my hidden costs? 😉
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