This is What People Don’t Get About Invisible Symptoms: Laurie’s Story
A Series of Interviews With Chronic Illness Patients, Uncensored and Raw Truths About Life With Chronic Illness.
If you have a chronic illness, you know that each story is unique, including yours. I’m always telling my clients ‘No one knows you better than YOU’. Of course, in this experience, there are some very difficult experiences shared by many of us: at some point a doctor has probably told you ‘It’s all in your head’, You’ve likely been dismissed, your symptoms minimized and may have been made to feel as if your body is lying to you. It’s important to hear from others who might be going through something similar, to see how we are all different and most of all – to know we’re not alone in this struggle looking for validation, treatment and support in getting our lives back.
Keep reading to learn how our next guest Laurie wants us to know about living with invisible symptoms…
What People Don’t Get About Invisible Symptoms: Laurie’s Story
Q: What brings you to the realm of chronic illness? How did it all start for you?
A: “I was diagnosed with Celiac Disease several years ago while the doctor was trying to figure the reason for my chronic anemia. I had issues over time with various pain and was diagnosed with severe osteoarthritis at a younger than average age. I had hand and knee surgery last year due to it and have more upcoming surgeries in my future. It was a rough year of 4 surgeries between Nov 2017 and Aug 2018. I then had even more severe gastrointestinal issues and finally consulted a doctor in Oct 2018. By Jan of 2019 it was confirmed I have a newer type of colitis called Microscopic Colitis. This is a type that can only be seen under a microscope from a biopsy. It is believed I developed it due to all of the NSAID’s I had used over the previous years recovering from surgeries.
Fast forward to headaches that they suspect is due to Large Cell Arteritis (Temporal Arteritis) and most recently was diagnosed with Chronic Fatigue and waiting on a rheumatology appt to confirm my doctors suspicion of Lupus or Rheumatoid Arthritis.
Prior to the Celiac Disease I have had a long chronic struggle with mental health. I started struggling with mental health symptoms in my tween and teen years.
Q: What’s the most challenging aspect of life with a chronic illness?
A: “The most challenging aspect for me is that my symptoms for the most part are invisible and very hard for most people to understand. When I had my knee and hand surgery of course I had casts and walkers that showed my pain. When the pain is due to an invisible illness it is much harder for folks to understand that you are not being lazy. They don’ t get when I say I hurt or am tired how intensely I am feeling that.
The other challenging aspect is my own expectations. I want to be more functional and productive. My illnesses keep me from doing as much as I feel I should and then I deal with feeling guilty and ashamed because I am not doing more.“
Q: What has been something rewarding or positive that has come from your chronic illness experience?
This is why I started blogging I want others to know someone understands. I also have met a great group of chronic illness bloggers recently that I feel have blessed me by being so welcoming to me as a new blogger.“
Q: What are some things you wish people understood better about your illness?
A: “As far as the Celiac Disease say you get a salad served to you with croutons on it. They say why complain just pick the croutons off. I wish it were that easy. If any of my food were to come in contact with gluten containing ingredients my food is no longer gluten free. If someone has an accidental gluten ingestion it takes up to 3 months for the gut to heal from that. If you are newly diagnosed please don’t think its okay to have just one bite. You may feel fine but the damage is inside where you won’t see it. It is not worth it to have that one taste and damage your intestines that much.
As far as the mental illness people say it can be snapped out of. Well no depression can’t be just snapped out of. I really wish people understood it without them having to go through it themselves.“
Q: What are some of the best techniques or strategies you’ve used to manage symptoms?
A: “I did Dialectical behavior therapy and though I hated it at the time because I was tired and depressed and didn’t want to “have’ to do it. I just wanted to be normal and not need to spend hours in therapy. In the long run forcing myself to go and complete all of the groups and homework was worth it. I think that is one key to me finally getting to a point of being stable. I still have days I fight with my mind but I learned a lot of coping techniques.
Things I do is distract myself by taking time to read or write. I now know to question whether thoughts I am having are from my rational mind or emotional mind. Making sure to eat better and get enough sleep is important too. I discovered I had sleep apnea and getting that treated by using a cpap makes a big difference . “
Q: Have you ever seen a therapist to help with your illness experience? If so, how has therapy helped you?
A: “Yes I have various times. At one point therapy helped because I knew someone cared and listened not because it was her job and she was getting paid but because she cared about her clients. I have to say therapy only helps if the person is willing to go to therapy and give it a shot. You have to be ready to admit you need help and want to change. “
Q: What advice would you give someone who recognizes something might be wrong but still hasn’t received a diagnoses or has just received a new diagnosis of chronic illness?
A: “Advice I would give is reach out to someone. It is important to seek help if you are feeling something is wrong. If it turns out nothing is wrong than you haven’t wasted time worrying. If you are waiting for a diagnosis that can be the longest hardest time of not knowing. My lesson here has been not to obsess or dwell over it. I have learned to be proactive and find ways I can help myself while waiting. Whether this means work on improving my sleep or being more social for support. Just do what you have to do to take care of you. If you have just received a new diagnosis doing homework and getting educated is good. However I’d put a limit on it. It can get very overwhelming and suck you down a dark hopeless feeling hole. Don’t go there.“
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