Having a chronic illness such as Fibromyalgia and Chronic Lyme Disease can be challenging and debilitating to say the least. Many of us are unable to work traditional jobs due to the intense pain, extreme fatigue, brain fog, memory loss and more. However managing our illness should be classified as a full time job.
You see I have been living with chronic illness for 20 years this year! Unfortunately, I have been unable to work since 2017 due to my chronic condition. Every single day is such a challenge that it actually feels like I’m working a 9 to 5. I say that because there are so many moving parts from 1) finding the right doctor, 2) to getting the proper diagnosis (in a timely manner), 3) to treatment (which can be a ton of trial and error), 4) everything in between and 5) the impact to your mental health. I thought it might be helpful if I broke down each step of the above mentioned process to help drive the point home.
- Finding The Right Doctor:
- Depending on your illness, finding the best doctor can be take anywhere from a week to a few months. For me, I was sick for over 11 years, going from doctor to doctor, treating the symptoms before meeting someone who could point me to an amazing doctor that I ended up working with. Whew…11 years is a long time. When I think about all the hours spent on the phone with various doctors offices, then in the car driving to and from the appointments, sitting in the waiting area then finally taken back to be seen by the doctor, I realize all the time that went into it.
- Getting The Proper Diagnosis:
- Now that you have found the right doctor it’s time to figure out what’s going on with your body. This can take some time. This may consist of lab work, MRI/CT Scans, XRays, Ultrasounds, Stress Tests, etc. There’s a lot of back and forth in this step as the doctor gets your results back from one test and schedules the next one until a diagnosis has been determined.
- Treatment:
- This step in the process may be ongoing, again, depending on your illness. Now that the doctor has landed on a diagnosis treatment can begin. At first he/she may start you on the most obvious plan of action (tried and true) that has worked on others with your same diagnosis. However, because everyone is different your body may not respond in the same way and adjustments may need to be made. That’s where the fun begins (I’m being funny here)! If you’re like me, this step has not been fun especially when you consider how many medication changes I’ve had over the years. I get it, your body starts to become immune to treatments if you’ve been on it for a long period time. I just hate all the times (and there have been many) where I’ve paid my co-pay for a 60 or 90 day supply of a particular prescription only to have it changed halfway through! Can I just tell you that does not sit well with me at all.
- Everything In Between:
- I put this here because there are tons of information on the internet that addresses just about every single illness out there. Supplements, exercise programs, diets and so much more. You will want to do your research to see which one might work best. The issue for me is the fact that there is so much information and can be both time consuming and overwhelming. I try not to get in the weeds too much and I pick and choose what I am willing to put my energy into to avoid all the rabbit holes that I’ve already been down. Whew…
- The Impact To Your Mental Health:
- Throughout this entire process, you may begin to notice the impact all of this is having on your mental health. Specifically after being turned away by a doctor who does not agree to take on your case, or after all of the tests that come back negative and you have to keep going back to the drawing board until a diagnosis can be made, or when others don’t believe you’re sick at all because you don’t “look” sick. All of this (and more) can leave you feeling depressed, isolated and anxious. This rings very true for me. Over the years I have battled anxiety and mild depression as all of this can really wear you down mentally. I mean it’s a lot to deal with. I can’t imagine those who are going through this alone (there are millions that do) I don’t think I could handle it. This too can take time to navigate and may very well be ongoing.
NEW NORMAL
Living with chronic illness oftentimes means there will be changes to your normal daily routine. Things will look different from the way they once were. The biggest change for me was accepting the fact that I could no longer work. That’s a big one and I would say it had the biggest impact to my mental health. Moving from corporate America to now managing my health was the most drastic change. Spending most if not all of my time managing ever changing symptoms, the countless trips to and from doctor visits, and spending a ton of time alone. I have spent many hours grieving the life I used to live and doing my best to accept the life I have now. I am doing what I can to help increase awareness and educate others about Fibromyalgia and Chronic Lyme Disease which is where this blog and my podcast come in. Not only do I advocate for myself, I advocate for everyone who lives with chronic illness. It is my life’s purpose to take what this illness has thrown at me and turn it into good. That too takes time!
Thank you so much for stopping by. Please be sure to like, share and subscribe to our blog so you’re in the know when we have a new blogpost. You can also find Windy’s Journey podcast now streaming on Apple Podcasts, Google Podcasts, iHeartRadio, AmazonMusic and Spotify! We need your support to help increase awareness about chronic illness and the negative impact it has on individuals and their families. Share this with someone who is chronically ill as it is my life’s goal to Empower | Encourage | Inspire others who are on this journey with me.
XO- Windy
And if not, He is still good! Daniel 3:18
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