It’s been almost 17 years since I began on my journey with chronic pain and illness. As I’ve been reflecting on where this journey has taken me, I realized how many things I wish I had known when I first got sick. Things that would’ve made my life a little easier and possibly even shortened the number of years that it took me to get the correct diagnosis.
While I try to find value in every twist and turn that has made my journey uniquely mine, I know how hard this life can be and if I can help minimize the challenges that come along with being chronically ill for someone else, it makes it all worth it.
With that in mind, I’ve come up with a list of advice for newly diagnosed patients. I hope it can help to ease the difficulty that living with a chronic condition can cause. Please keep in mind that I’m not a medical professional, just someone who has a lot of experience in this area of life.
So where do you start when you’re first diagnosed? How can you make the most of life with a chronic illness?
Research and learn as much as you can about your condition.
We’re lucky these days that we have a wealth of information at our fingertips with the internet. Research your condition on reputable sites such as WebMD, National Institutes of Health, Mayo Clinic and more. There are also a lot of advocacy groups for different conditions that can provide great information and resources. I’ve learned a lot about my condition from The Ehlers-Danlos Society web page.
You can also join Facebook groups for your condition to learn from other patients who may be farther along on their journey than you. I’ve found this to be immensely helpful in assuring me that I’m not alone on this journey and for asking questions and interacting with others who are walking a similar path.
Keep a record.
This is something I really wish I had done earlier in my life. Make yourself a binder so that you can keep visit summaries that you get at the end of each appointment, ER and hospital discharge paperwork, test results such as MRIs or bloodwork, an updated medication list, and anything else pertaining to your healthcare.
If you have a complex chronic condition, having detailed and organized medical records can help specialists a great deal when going through your medical history and trying to get an idea of what you’re dealing with. This will save time during doctors appointments (which is so valuable) and help your doctor in coming up with the best possible treatment plan.
They even have a really helpful new app called Backpack Health which provides an online platform to organize all of your health records and information to take with you to each doctor’s appointment. With this app, you don’t have to carry a big, heavy binder around to each appointment. Instead, all of your health information is conveniently stored on your phone.
Keep track of your symptoms.
Keeping a diary of your symptoms can be a really helpful way to become more aware of what might be triggering certain symptoms and provide clues to help you take better care of yourself. For example, by keeping a daily headache diary, I was able to identify triggers that were making my headaches worse such as certain foods, low blood sugar, and certain physical activities.
By keeping track of this information, over time you will get to know your body better and be able to avoid certain triggers that can make your symptoms worse. It can also be very helpful to take this data to your next doctor’s appointment to help your doctor figure out what’s working for you and what isn’t.
Be your own advocate.
Unfortunately, in today’s healthcare system, you have to stand up and fight to get the care that you need when you have a chronic illness. You have to be your own advocate. This is why researching your condition and educating yourself the best you can is so important. Because of insurance and other requirements, many doctors are only able to have 15 minute appointment windows. That’s not a lot of time when you have a complex chronic condition.
You have to learn how to make the most of this time. And you also have to realize that while many doctors can provide excellent guidance on how to best manage your condition, they are not able to know absolutely everything. Do your research before an appointment and come prepared with a list of questions about the most important issues you want to address.
If you have concerns that your doctor seems to just brush off or if you feel like they’re not really listening to you and answering your questions, that’s when you may have to consider finding another doctor. I learned about cerebrospinal fluid leaks and did a lot of research on this condition before seeing a new headache specialist and asking him about the possibility that this could be the cause of my headaches. This doctor told me there was no way I had a CSF leak and that I just had to learn to find a way to live with my chronic migraines.
I didn’t accept this and found a new doctor. I did more research and found the top experts for treating CSF leaks and went through the lengthy process of getting an appointment with one of them. I was eventually correctly diagnosed and treated for a cerebrospinal fluid leak by an expert on the condition. If I had listened to the original headache doctor who told me that I couldn’t possibly have a leak, I would still be suffering and not know what was truly causing my pain.
My best piece of advice is to trust that you know your own body best. If you believe that something is wrong and feel you’re not being believed or listened to by your doctor, get a second opinion. Fight for your health. I can’t stress this enough.
Let yourself grieve your old life and take time to accept your new “normal.”
You have to learn to accept that your diagnosis might mean that you have to do things differently than you once did. I used to be a runner that ran over 5 miles every day. But since I got sick, running just exacerbates my headaches, so I’ve had to accept that I’m not going to be a runner anymore. I’ve had to accept my limitations and learn what I can still do. Yoga is a much better option for me these days than running. I’ve had to make some changes but I’ve learned to embrace and enjoy what my body can still do.
If you can, find a therapist that specializes in working with patients with chronic illness to help you work through the emotional toll that comes with this life. My therapist has been immensely helpful on my journey to learn how to live the best life possible with a chronic illness.
Be aware that this diagnosis will also affect those around you and they will need time to adjust too. Try to be as open and honest as you can with the people in your life about how you’re both feeling about your new diagnosis. Show yourself and others kindness and compassion as you navigate this uncharted territory.
Being newly diagnosed with a chronic condition can be overwhelming at first. But you don’t have to go through it alone. There is a lot of support and resources available to help guide you on this new journey. Hopefully this post helps you to get started. Don’t hesitate to contact me if you need more guidance. I’ve been on this journey for a while now and would love to share more about what I’ve learned.
Remember that you can live a full and rewarding life with a chronic illness. Trust your body, educate yourself as much as you can, and make the most of your new reality.