Coping With Specialty Medication Mayhem

If you have a rare disease, you are probably aware of the struggle often involved in finding treatment for rare diseases. Even once we find a treatment that works for us, gaps in insurance could result in us being unable to access the only treatment option we have. Sometimes these gaps are temporary until we are able to jump through the hoops that insurance companies often have for accessing specialty treatment required for rare diseases.

Coping with medication access issues

I, for one, have spent hours waiting on hold with my specialty pharmacy and insurance, receiving delays in the shipment of my medication and contradicting answers about the solutions. I have had to learn how to cope with these moments of extreme stress – after all, I literally need my medication to be able to stay awake to do basic things like driving! Such high stakes can make these situations extra stressful for me. Some ways that I cope during these times include:

Focusing on what is within my control

It can feel powerless to need medication and not be able to access it. This lack of power in such a stressful situation can be distressing. I find it helpful to reframe my thoughts toward the parts of my life that I do have control over. This includes going back to the basics – practicing good hygiene, eating nourishing food, and soothing myself with hobbies such as hiking or crocheting.

It helps me feel better when I get tasks done that have been sitting on my to-do list for months during times like these. Although reframing thoughts isn’t a fool-proof method of stopping the anxiety, it can help reduce it to a more manageable level. At the very least, you’ll be taking extra good care of yourself, which we always deserve.

Being extra nice to people on the other end of the phone

Sitting on the phone for hours without many answers about medication access can get frustrating. It can be easy to take out these frustrations on the people on the other line. Most of the time, it really isn’t their fault.

These are the people that have to answer calls to pay their rent. They don’t make the rules. Being nice to them also has the extra perk of getting better treatment on occasion. In many cases, it improves the experience for both ends of the party.

Thinking outside the box to find treatment for rare diseases

Navigating the medical field as a patient can be confusing and scary all at once. Sometimes the best thing to do is to step back from the problem and get some perspective.

Is there anyone in your life you could ask for advice from on working with insurance? Are there other people in the rare disease community that can validate your experiences? Is there another doctor you can work with? Sometimes the solution is simply persistence and time. Other cases might involve more strategic solutions.

Have you ever experienced a lack of access to medication for your rare disease? How did you cope with this issue? Share with us in the comments below.