Please welcome the lovely and wonderful Beth to the blog today! She’s going to discuss some tips for handling chronic illness, which as we know often has a high co-morbidity with mental health issues. In fact, one of the books I’ll be discussing in the event deals with this exact situation. So without further ado, take it away, Beth!
In the 12 years I spent searching for a diagnosis to my health issues, I made a lot of mistakes. Expensive, exhausting, damaging mistakes. So I distilled those into some wisdom for you.
Tip #1: Advocate for Yourself
In Western medicine, we assume doctors are the experts we pay for and are practicing medicine because they genuinely want to help us. So we tend to believe medical diagnoses/opinions and don’t rock the boat too much.
Don’t do that. Question everything.
Here’s the thing: The body is complex and there are a bajillion things that can cause symptoms (mostly a cascade affect). Doctors are paid to spend about 40 minutes with you. If they’re good, they might spend an additional 10 minutes before or after your visit, making notes and reading your chart.
Until you can get a (correct) diagnosis and see a specialist, your doctor is only ever taking a shot in the dark based on general info.
And when we’re talking about women’s health, which is (enragingly) under-taught in medical school, under-researched, and under-tested, it’s like a wet hanky in the dark.
Ask your doctor WHY they think you have that thing, WHY they think this medication will help, WHO else you should see to confirm/treat this diagnosis. If your doctor is offended by these questions, find another doctor immediately. Get a second opinion and, if at all possible, see a specialist in whatever you’ve been diagnosed with. Yes, this requires a lot of money and energy, but the sooner you can see someone who knows what the hell they’re doing, the sooner you can start feeling better. Also, doctors who are just guessing can do you harm (not to mention waste your money and time) with incorrect diagnoses and experimental treatments.
You mustmustmustmust be a fierce advocate for your own body.
Tip #2: Wellness is your J-O-B
There’s a lot of talk about self-care, and everyone should practice it, but when you’ve got a chronic illness self-care is a full-time job. The pay is crap, but the benefits are amazing.
Unless a specialist you trust advises otherwise:
+Have a regular sleep schedule of 7-9 hours of sleep per night. Schedules can really help your body normalize other processing systems.
+Drink plenty of water, and limit your intake of caffeine and alcohol
+Limit your intake of inflammation-causing and gut-impairing foods (this usually requires trial and error, but in my experience too much sugar, meat, legumes, and dairy will cause flare ups of my disease).
+Have scheduled down time. This could be regular naps, or 2 hours a day to read or watch TV, or whatever. The design is to have dedicated time where NO ONE is making demands on you. If it needs to be mental rest, physical rest, or both, make sure you get it every. single. day.
+Stay flexible. Not everyone has a flexible job or home life, but be as adaptable in your plans/chores/errands/to-dos as possible, so you can cancel if you start feeling bad.
+Give yourself permission to NOT do the thing. You are not a failure, and you won’t lose true friendships if you decline that obligation, or reschedule it.
+Do something every day that lifts you up. It’s easy to get depressed when you have to arrange your life around your body, so every day make a space for something that genuinely brings you joy.
Tip #3: Ask for Help
Most *healthy* people can’t do everything that American culture tells us adults should do. Don’t expect yourself to be able to meet that bar. Make sure your loved ones understand your illness. Take care of yourself as much as possible, but don’t be afraid to ask for help. You are not co-dependent, childish, or failing in any way for being a vulnerable human being.
In fact, humans LOVE helping other people out. It gives a chemical boost in our brains, a natural high, and empowers us. Even at my most exhausted (which for me can mean emotionally unstable), loved ones were more than willing to make me a meal, drive me to an appointment, help me go grocery shopping, clean my house, etc. You would be amazed what people are willing to do when they love you and know that you just can’t do the thing right now.
(Be sure to thank your helpers often and however you can, so they feel acknowledged)
Tip #4: Cultivate a Support Network
You’ll find yourself, at some point, needing an outside perspective. This could be the days where self-pity swamps your brain, or it could be the days where your doctor says something that rings false- either way, you’re going to need a group of people whose experience is similar to yours who can weigh in. Thanks to the internet, there are a lot of support groups out there (plus, if you have a therapist, they can often suggest in-person support groups). This can be a great opportunity for education, empathy, or just a safe place to complain about your situation without worrying about randos being patronizing in response.
And most of all, know that you’re not alone. Some days are going to suck and that’s OK. Lean into it. Some days are going to give you hope for a bright future and that’s OK, too. Lean into it. No matter what monster you’re fighting, you’re not alone and we’re all grateful that you’re here.
1999- I first start displaying symptoms (according to my mom. I am oblivious)
2000-2007- I get ill more than usual, tired more than usual, and struggle with mental fog. I handle this by ignoring it.
2008- Chronic migraines begin, 4 days per month, every month
2010- I get ill every 3 months, symptoms last 4-6 weeks. Afraid of being laid off, I start seeing doctors for my specific symptoms.
2012- End up in hospital with symptoms of gout, exhaustion now constant, social life in ruins. Do rounds of allergy shots.
2013- Naturopath (mis)diagnosis me, I do 3 months of experimental IV treatments, several medical diets.
2014- More bizarre medical traumas. Tests continually come back “in the normal range”.
2015- Change doctors and specialists. More medically supervised diets.
2016- Exhaustion and symptoms now causing so much interference in my daily life, I fear I won’t be able to have a job at all. Menstruation gets suddenly worse. Migraines occur more frequently. End up in urgent care three times for bizarre medical issues.
2017- Endoscopy, colonoscopy, MRIs, CT scans, more experimental treatments, more medically supervised diets. New rheumatologist. Migraines start becoming pain-med-resistant. Enroll in migraine clinical trial.
2018- Specialist identifies my diagnosis as “Total BS”. Friend suggests I have endometriosis. Much research and many tissue samples, exams, and doctors later, I have a hysterectomy, removal of endometriosis, removal of ovarian cyst the size of a golf ball. Healing is slow, but stamina starts to stabilize. Migraines now 15 days/month. Still getting sick every 3 months for 4-6 weeks each time.
2019- Allergic reaction to new migraine medication. Change primary care doctor and specialists. Start allergy drugs. Get diagnosis of myalgic encephalomyelitis, started new treatment. Investigate surgery to fix sinus issue.
In addition to primary care doctors, OBGyns, surgeons, and naturopaths, I’ve seen a dietitian, ENTs, gastroenterologists, rheumatologists, cardiologists, allergists, immunologists, neurologists, therapists, an infectious disease specialist, and a partridge in a pear tree. I’ve had IV infusions of vitamin C, contrast hydrotherapy, hyperbaric chamber therapy, mystery medication in development, numerous elimination-style diets, scopes in every orifice, and countless blood, urine, tissue, and breath tests.
It’s been a long road JUST to get a diagnosis, but a diagnosis both guides effective medical treatment and gives me a defense on days where I can’t physically make it into work, or out to a scheduled event.
If you’re struggling with chronic symptoms but don’t yet have a diagnosis, I encourage you to follow the tips above and fight until you get one. It’s worth the journey.
And while you’re on that road, see how fast you can get a BINGO!