Chronic illness is a relentless challenge that takes a toll not only on your body but on every aspect of your life. From navigating the medical system to maintaining relationships, nothing is quite the same. Throughout my journey, I've faced many harsh truths and realizations that has forced me to adjust my mindset, expectations, and approach to life.
These realities have been difficult to accept but acknowledging them has helped me better manage my illness, find a sense of control, and develop a deeper understanding in the shifts of support with family and friends.
Here are a few of my harsh truths:
During doctor's appointments, you typically get 15 to 20 minutes to explain your symptoms, receive a potential diagnosis, and discuss treatment options. Unfortunately, it's never enough time, and it feels like you’re another cog in the machine.
Dealing with an invisible illness and the complexity of many different symptoms, it's impossible to cover everything in one visit. Because of this, I’ve learned that efficiency and preparation are key for doctor’s appointments.
Early on in my search for answers, I realized pretty quickly that my story was too long to fit during these 30-minute appointments. A lot of times, I could visibly see doctors lose interest as I would go in-depth on my timeline of illness. Some even suggested my symptoms were all in my head, a common theme for those dealing with an invisible illness. They also probably saw in previous notes that I've seen multiple doctors already, giving this preconceived idea that I'm a hypochondriac.
In reality, I just wanted answers. Honestly, I get it, they’re likely overwhelmed by the flood of illness in today’s society. There are simply too many patients to see, and that’s not counting all the non-medical tasks they have to manage.
It’s also hard to get anything done quickly, and it can take months to see a specialist, and during that wait, you’re stuck. When you finally do see someone, it takes more time to get tests ordered, then more time to get follow-ups, and even more time to start treatment.
You can also find a well-reviewed doctor, but if they don’t have experience or knowledge about the condition you’re trying to address, it will likely be a waste of time. Managing a chronic illness is truly a full-time job.
My experience with doctors has been a roller coaster. Some have refused to run imaging or bloodwork because they didn’t think it was necessary. Instead of sitting around waiting, I’d often research other specialists and book an appointment until I found one willing to order the test. The same goes for follow-ups: if I don’t hear back within the expected time, I call to get things moving. I’ve learned that you must put in a lot of effort to get a doctor or their office’s attention.
You know your body better than anyone, and if something feels off, keep looking for someone who will take you seriously. Dealing with chronic illness can make doctor’s visits one of the most frustrating and exhausting things you’ll face. It’s common to leave appointments feeling dismissed, not taken seriously, and left with no answers.
While I believe there are good doctors out there who will go the extra mile, ultimately, you have to be your own advocate and keep pushing until you find the right one.
When I became officially disabled at the start of 2024, I fell into a loop of self-pity and grief. I had already been dealing with the toll of an unexplained illness since 2013, slowly deteriorating my body over the years. When 2024 hit, I experienced many new or worsening symptoms leading to physical limitations that left me nearly nonfunctional. I sank into a deep sense of hopelessness.
I became consumed by the unfairness of my situation, stuck in a cycle of feeling sorry for myself. Everything became a trigger. I would scroll through my photo library on my phone and get emotional about the things I used to be able to do and experience.
Watching old travel videos made me wonder if I would ever be able to do those things again. Even seeing people driving would trigger me because I assumed they weren’t in pain, reminding myself I couldn’t drive without discomfort. Watching neighbors walk their dogs made me wish I could do something that simple without feeling debilitating symptoms.
It took several months to get out of this cycle of thinking. While I still get those thoughts occasionally, I’ve realized that self-pity gets you nowhere. It’s natural to feel sorry for yourself when chronic illness isolates you from the life you once knew, but for me, it became a trap.
Now, when those thoughts come up, I try to respond differently. Feeling sorry for yourself is understandable, but it makes it hard to move forward. It’s not necessarily about ignoring the difficulties of chronic illness but choosing to focus on what you can control instead. I’m still working on this, but now, instead of sinking into sadness, I’ll sometimes respond with anger.
I’ve learned that anger can be a healthier emotion since it fuels my determination to fix it. It drives me to take action and search for answers or treatments rather than fall into a state of hopelessness.
Letting go of self-pity creates space for acceptance, problem-solving, and self-compassion. It allows you to set realistic goals and find meaning, even with the challenges of chronic illness. You can’t always control your circumstances, but you can control how you respond to them.
In the beginning stages of becoming disabled, family and friends had a lot of concern and reached out frequently. They were constantly asking how I was doing and offering help wherever they could. However, as time went on, the calls and messages became less and less.
At first, I felt a little abandoned by it, and wondered if my situation was no longer important to them. My struggles were still there, and my daily battles with chronic illness hadn’t improved. I also wondered if it was because my response to the “How are you doing?” was always the same, “Still no changes or answers.” So, I felt like I was boring, and a buzz kill any time I was honest about how I was feeling.
Over time, I realized that this shift wasn’t necessarily a sign of people caring less. Life moves forward for everyone, and while my reality has been an all-encompassing challenge, their lives continued as well. They have their own families, careers, and challenges to manage. It’s not that they don’t care about me; it’s that their time, energy, and focus get pulled in different directions.
The truth is, life doesn’t revolve around me, and everyone has their own struggles, their own issues, and lives to live. While people may not be able to keep up with me as often as they did in the beginning, that doesn’t mean they don’t care.
It’s difficult to sustain the level of support that initially follows a crisis. People offer what they can, when they can, and that’s enough. My pain, while constant for me, is only part of the larger picture for the people around me.
My experience with chronic illness has taught me the value of deepening my relationships with those who continue to show up, whether it’s through a quick text message, a meaningful conversation, or simply knowing what they’re thinking of me.
I now focus less on what I’m not getting from others and more on appreciating the support I do have, even if it looks different than it once did.
Managing chronic illness is exhausting, both physically and emotionally, and tests your patience, relationships, and self-belief. It comes with harsh truths about the medical system, your own limitations, and the shifting dynamics in your personal life. However, by facing these truths head-on, I’ve learned you can better advocate for yourself and appreciate the support you do receive.
This process isn’t easy, and there’s no quick fix, but by letting go of self-pity and accepting that life doesn’t stop for anyone, we can find ways to cope and push forward. While much of the journey can feel out of our control, we can choose how we respond to it.
What harsh truths have you or someone you know faced during a difficult situation, and how did you handle them?
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