The Hidden Costs of Chronic Illness -- and How You Can Help

Chronic illness is expensive, not just in the traditional sense, but from a physical and emotional standpoint, too. Here are some of the hidden costs of chronic illness that I’ve experienced, in no particular order:

1. Medical Treatments

Many specialty appointments have costly co-pays or they need to be paid for completely out-of-pocket. In my experience, to see a therapist more than once every two months, I needed to go out of network. Naturopath, acupuncture, or massage therapy treatments, which can be very beneficial, also often incur large fees and are not covered by insurance.

2. ER Visits

When the pain gets too intense or new symptoms arise over the weekend, advise nurses often advise patients to go to the ER to get evaluated. Not only do ER visits usually involve expensive co-pays, they usually mean long wait times and can, unfortunately, lead to medical gaslighting too.

3. Prescriptions

It takes a lot of trial and error to find the correct medication to help manage pain and symptoms. Each medication is costly, especially depending on the brand and the type of insurance that you have. Plus, there are no refunds if the medications do not work. Personally, I have at least 20 bottles of medications that I have needed to dispose of because they did not work for me.

4. Inability to Work and/or Needing to Take Time Off Work

Oftentimes doctor’s appointments, especially specialty ones, can be very difficult to secure. This often means needing to take appointments when they are available and not when they are convenient. This means needing to take time off of work, and if doctors are running late or behind schedule, this can mean missing a full day or half a day of work for each appointment. In addition, some chronic illnesses can lead to temporary or permanent disability, and as a result, people may be unable to work. This means living off disability benefits or a partner’s or a family member’s salary, while also needing to continue to pay for health coverage and/or expensive treatments.

5. Mobility Aids, Health Products, and Comfort Items

To make navigating trips to stores and appointments easier, mobility aids can be very helpful, but they are expensive. For me, living with small fiber neuropathy, postural orthostatic tachycardia syndrome (POTS), and vestibular migraines means needing many health products to manage my symptoms and pain. For example, I had to get a shower chair to make showering realistic and tolerable. My migraine attacks and nerve pain became less painful with the use of microwaveable heat pads and ice packs. The tachycardia that I experience daily became more tolerable and controlled with compression socks, shorts, and leggings. Again, all of these were out-of-pocket costs as they are suggested, and not prescribed.

6. Specialty Foods and Supplements

Many people need to make dietary modifications to manage their condition; for some, like me, this means avoiding dairy products and buying non-dairy alternatives instead. While there is no shortage of non-dairy and vegan items on the market, they are very costly. Also, doctors often recommend certain supplements. For example, for my chronic migraines, I take a hearty dose of vitamins and supplements, such as CoQ10, feverfew, magnesium citrate, and riboflavin; all of which need to be paid for out of pocket. Additionally, to help with my postural orthostatic tachycardia syndrome (POTS), I need to increase my daily salt intake, which translates to purchasing a lot of electrolyte packets every month. At one point, I was ordering and drinking four two-liter bottles of Pedialyte every two days. That adds up!

7. Social Isolation

While not a financial cost, there is a physical and emotional toll from being socially isolated. Chronic illness is long-term, and often after the initial diagnosis or onset of symptoms, people go back to their own lives and may not reach out anymore to offer support or visit. This is particularly complicated during the COVID pandemic as many chronically ill people are also high-risk and cannot attend large gatherings for fear of exposure. Getting more social connections may mean becoming more reliant on technology, social media, and texting, because that’s more accessible than in-person gatherings, especially if driving is out of the question and there are no clear steps taken to reduce the risk of exposure to COVID.

These physical, financial, and emotional costs become burdensome. If you have a loved one who lives with a chronic illness, here are some practical ways you can help offset these costs:

1. Ask your friend if they have a wish list of items that would help them physically or emotionally.

If they do, buy something off of it for them. If they don’t, offer to set one up for them, so that when someone inevitably asks, “Let me know if I can help,” they can respond with a link.

2. Offer up your time.

Drive them to an appointment, and if they’re up for it, take them out for a nice meal or to a coffee shop afterward. Doctor’s appointments are exhausting and lonely; it can help to have someone to distract them and give them something to look forward to afterward.

3. Offer to pick up groceries for them.

If that’s not feasible, send them grocery or meal delivery service gift cards like Door Dash, Grub Hub, or Instacart.

4. Offer to take a nagging chore off their to-do list.

Help with doing their laundry, walking their dog, vacuuming, or doing the dishes. Cleaning can take a lot of energy; energy that in periods of high pain, they just don’t have.

5. Send them a text or card in the mail telling them how much they are valued and missed.

One of the worst parts of chronic illness is feeling alone and forgotten. A simple message can help take some of this pain away and can be a good reminder that they are still thought of fondly.