Last week I wrote about why getting a diagnosis can be so difficult: it can be expensive in terms of both money and time, and patients and doctors don’t speak the same language. On top of that, there’s a social cost: someone who is trying to get a diagnosis is often dismissed by friends and coworkers as a hypochondriac or faker.
If someone you know is trying to get a diagnosis and they’ve had to go to more than one appointment or have more than the usual blood and urine tests, they are likely frustrated. They may be stressed out about how much money, time, and energy they are putting into the process. They may also feel lonely. Looking for a diagnosis can alienate someone from people they used to be close to.
When I was having what turned out to be brain bleeds before my arterio-venous malformation (AVM) was diagnosed, I was lucky to be surrounded by people who supported me. My boss and co-workers didn’t question whether I was really experiencing the brutal headaches I described, even though they didn’t see me when I was having a headache. My then-husband encouraged me to keep seeing doctors, even when we didn’t have insurance and it felt like we couldn’t afford it.
No one was questioning me besides the doctors I was seeing, but I still often felt alone. I had seen and heard lots of questioning of other people about their symptoms. For example, my grandmother had many medical issues and her husband and son regularly questioned “how real” her symptoms were since doctors weren’t diagnosing anything. They groaned audibly whenever she mentioned a stomachache or headache. When guests came over, her husband would say, “Please don’t ask her how she feels!” with a roll of his eyes.
Growing up with this allowed me to internalize the message that doctors know our bodies better than we do. Whenever one of the headaches or smell reactions came about, I had an argument in my head: one voice asking me, “Are you sure this is happening?” and another one saying, “Yes!” But no matter how emphatic the “Yes!” was in my head, there was always that second voice, gaslighting me, making me wonder, was I just weak? Did everyone have headaches like this but I was the only one complaining because I was pathetic?
Chances are, your friend looking for a diagnosis feels some shame about their search. You can help alleviate some of their feelings of being alone. Try this:
- Believe them. Even if you have had very different experiences with pain, memory, mobility, organ function, or whatever, understand that your experiences are not universal. It’s fine to ask questions for better understanding, such as, “Have you noticed any triggers for the issue?,” but don’t question whether your friend’s experience is real. It’s very likely that your friend’s concerns are being minimized or even dismissed by healthcare providers. Your job as a friend is to validate their experience and support them in the difficult process of getting a diagnosis.
- If you’re able to, offer to accompany them to appointments. Having someone else there to listen and simply silently support can be helpful. When I was trying to get my vision issues diagnosed, my husband came with me to an appointment; being able to talk with him afterwards about what the doctor said helped me clarify my next steps. If you live far away, your friend might be able to have you “Zoom” into the appointment.
- If you’re not able to accompany them to appointments, you might offer to run errands for them, pick the kids up from soccer practice, or do something else to offset all the time and energy they are putting into healthcare appointments.
- Ask what would be helpful. If you’re not sure what they need, you can ask. “How can I help?” is a great question and much better than “Let me know if I can do anything,” which is very close to useless. You can also ask questions like, “Do you want to be distracted or do you want to talk about this?” Don’t assume you know what’s best.
- Aim to support, not solve their problem. Hold space without suggesting what you would do (unless they ask you).