Loneliness in Chronic Illness & My Experience Navigating the Medical System in the US vs Abroad
You're Not Alone in Your Story
The original plan was to talk about loneliness in chronic illness, mental health, or in whatever else causes you pain because let's be honest... it sucks. Nobody understands your experience, some people may even think you're exaggerating because you may not "look like a sick person" (see picture above) and just have the same aches or pains everyone else has, and doctors are less than helpful.
Meaning... how many times have you been told your issue is just anxiety or depression or were prescribed birth control, before you actually got any answers. This story is all too common, so if it's yours too- I promise you are not alone.
For me, it took 10 years between the first disappointing doctor's appointment I got at 16 until I finally got a diagnosis of Hashimotos at 26. And my journey didn't even end there.
So what's my goal here? I feel my deep purpose in life is to make people feel less alone in their pain. My purpose is not just to give you hope, healing, or be the next top health professional but it is to connect on a personal level and help you get your power back.
Step#1 to getting there is to make you realize it's not all in your head and you're not alone in this journey. There's a level of PTSD you develop after dealing with chronic health issues (diagnosed or not) over the years. You start to lose hope in healing, maybe lose trust in humanity, you lose connection to things and people you once loved, and through all of that you lose yourself. You begin to see yourself as this broken version and at least for me, it made me hold onto a lot of shame and guilt for not being able to be more than that. I missed that old vibrant, bubbly, happy, energetic, hard working self but no matter how hard I tried, I couldn't be that person anymore. I had to slow down just to get through the day.
Can any of you relate?
What I found after working with others and even in my own journey, is that there is a magic that starts to happen when a person feels seen. The relief you experience when you FINALLY hear someone say "oh, I know what you're going through because I've seen it before"- either in practice or within themselves. What you're going through is real, is difficult, and you're not a flawed person because of it. Most importantly, there are things that can be done to get you to the other side because it's worked before.
So I'm going to give you a little about what didn't work for me and maybe it'll save you or someone else 10 years of the rollercoaster I went through...
My Experience with the Medical System
Like I said before, it started when I was 16 and I was having severe lower abdominal pain. My mom was going through her own health journey with fibroids at the time, so I thought maybe I had something similar. Like what any rational person would do- I went to my OBGYN.
However, all I got out of that is an ultrasound that we had to pay thousands of dollars out of pocket for because they put on the lab order that they didn't think I needed it, a doctor who completely dismissed me, and my parents suggesting I'm dramatizing everything.
Fast forward to my first year of college and at this point, my health crashing. I am constantly sick, my pain has gotten so bad that I’m crying myself to sleep, my tongue has white flakey patches, I’m always freezing, I'm suicidal every other week, and my pulse is so low that it’s getting difficult to breath so I sigh all the time to get more air in. I'm also living with achey painful joints, but I was already told that symptom is genetic so I'm not giving that one much thought.
At this point, I'm thinking maybe my abdominal pain isn't female related but instead a digestive issue (by the way, something like endometriosis can cause pain like this, yet gut dysfunction can also trigger endometriosis by causing estrogen dominance. Thus, healing the gut can also help get endometriosis under control.). I find a GI, but he says I don’t need any labs or colonoscopies since I don’t have visible blood in my stool, so I should be fine and he sent me on my way. I remember I was shaking leaving the appointment so disappointed.
I go back to a OBGYN, but they didn’t help me outside of offering birth control or pain meds. I had already tried birth control before and it triggered bladder infections, yeast infections, weight gain and irritability so I did not want to do that again. And for people who are not aware, there are studies that show that oral contraceptives are associated with increased levels of fungal overgrowth, nutrient depletion, and hypothyroidism (all of which I later found out I developed).
I try out a few primary care doctors and while they ignore the stomach pain I keep complaining about, they fixate on my low pulse and sent me to a cardiologist for an EKG.
The cardiologist continues the fixation on my heart and after using a cardiac holter monitor and diagnosing with me with frequent PVCS, he suggests heart meds or ablation so that I avoid sudden heart failure. My parents are mathematicians and scientists (and one even works in pharma) so they wanted to see numbers because committing to an invasive procedure. One they were told the likelihood of improvement is 60%, they immediately said no. That was like a 50/50 shot in the dark. Read on, because later on- I get a completely different experience about what to do about these PVCs in another country.
I am grateful that my parents didn't allow me to get surgery because it forced me to find my own way to heal, but at the time, it left me even more lost and confused. I did try the meds which made things feel a million times worse, so i quit and was left with nothing.
I still felt like I needed more answers, so I thought maybe there is a communication error. I thought doctors were like House or the guy in Royal Pains acting like investigative detectives to figure out what was wrong. Surely, it was just my fault for not being clear about what was going on or what I needed, so I started to prepare for my appointment and bring notes.
I will never forget one specific experience with a female doctor. I can still see the room. I had asked her if we could figure out why this is happening with testing and limit the amount of drugs I'm prescribed and she said no. Then she told me that if that's what I want, she can't work with me and asked me to leave. I asked if she could refer me to someone who can and she said no.
Now, knowing what I know- there are SO many things they could've tested for that they didn't. Maybe the lack of answers was the motivation I needed to land on this path, but it would've been nice to know what exact diagnoses I was presenting with at the time.
Here's a list of things they COULD have tested for from a conventional medical (not functional medicine) perspective:
- Endometriosis (an invasive procedure) due to my lower abdominal pain and horrible periods
- SIBO (a breath test) due to bloat and abdominal pain
- H Pylori (a breath test) due to the canker sores, and feelings of ulcers in my stomach and lower abdominal (I did eventually get a positive test on a GI-Map)
- IBD due to lower abdominal pain that kept me from sleeping
- Celiac due to fatigue, digestive issues, and worsening symptoms after eating gluten
- Thyroid disease (blood work plus ultrasound) due to fatigue, cold intolerance, digestive issues, depression (I did get this eventually after I went to Belarus and again with an integrative doctor)
- Arthritis due to chronic joint pain and bone on bone grinding when I walked up the stairs (if you're wondering- this is gone now but until I found functional medicine I didn't realize it could disappear)
- Addison’s disease due to feelings of exhaustion, burnout, and fatigue. Thyroid disease and adrenal dysfunction is commonly linked
- Lupus due to abdominal pain, joint pain, anemia, mouth sores, headaches. It's also common to have if you have a history of Hashimotos, which I do
- CBC differential for infections as many of the symptoms I had could be due to unresolved infections
I also want to mention here that many of these are connected with each other. I know people who've started out with endometriosis, only to later find out it was actually SIBO. Others who share early signs of digestive discomfort, only to ignore it before later being diagnosed with some form of autoimmune disease whether it's IBD, celiac, Hashimotos, RA, or lupus. Please don't wait when you have early signs. The earlier you catch things, the easier it is to heal. If you don't like the provider you're working with now, look for other options.
The Turning Point
One day, I was at Barnes and Nobles, and stumbled upon Kris Carr’s Crazy Sexy Diet book. I thought to myself that at this point in my life, I'm crazy and maybe going on a sexy diet will solve all my life problems.
What I didn't expect was that this book was about a woman who was diagnosed with cancer and used diet and lifestyle changes to turn her life around. Even though I didn't have cancer, this was the first time in my health journey I felt heard and seen.
Her whole book was about all the lifestyle pieces that helped her and interviews from medical professionals on why they were useful. I was so relieved to find some guidance outside of the care (or lack of care) I was currently getting and at the end of the book, she had a 21 day cleanse.
GUESS WHAT? IT WORKED.
The cleanse was vegan and gluten free and involved a lot of other challenges as well, from specific workouts or meditation or deep emotional work. Within 21 days, ALL OF MY PAIN WAS GONE and I wanted to spread the word.
In hindsight, what made the difference for me was that I didn't know I was intolerant to gluten and dairy. From a digestive perspective, a high fiber diet can also feed the good bacteria in your gut so I believe that was also helpful. However, in my opinion, eliminating meat long term is not necessary or recommended for everyone and there are situations in which a high fiber diet can initially be aggravating to some people.
I started to feel better with this new diet, but then I landed myself in the ER from stomach pains in Belarus when visiting family and after eating dairy- sour cream is added to EVERYTHING there.
In their ER, I felt like I truly got the royal treatment compared to what I experienced in the US.
Within 3 days, the doctors checked for appendicitis and ruled that out. Then they noticed my pulse and immediately did an EKG, finding the same conclusion of PVCs. The difference was this time,RIGHT AWAY, they rolled me into the next room to check if my thyroid is off. They did blood work that confirmed subclinical hypothyroidism and an ultrasound on thyroid and my liver/lungs which showed nodules and a goiter in my thyroid and cysts in my liver.
They also did a food allergy blood test per the request of my grandma and it said I was highly allergic to cow and goat milk. There was only 10 things on the sheet that they checked, and gluten at the time was not on it. Gluten sensitivity was also not as big of a thing yet compared to how it is now, so that is something I figured out later.
Before I left the hospital, they gave me supplements, diet and lifestyle recommendations to manage all this and sent me on my way. I was so happy to get this sort of treatment, but I also knew I wasn’t done.
I then came back to the US and my docs continued to disappoint. They were still fixated on my heart and not connecting the dots with my thyroid. I agreed to monitoring all my labs and doing my annual cardiovascular visit but at this point was just trying to educate myself more on diet and lifestyle since that’s the only thing that moved the needle for me.
I felt better for a while, until I moved into an older house and had a stressful semester. Within that 4 month period, I gained 40 lbs, developed insomnia, and started having panic attacks. At first I thought it was a heart attack and my time to go, but the ER told me it was panic attacks. I also had this painful spot on the left side of my head that felt like it would swell under stress. I genuinely thought I was going to have an aneurism, but I didn't know who to go to about this anymore after the experience I already had. Learning quickly became impossible bc any new info even a bullet point list of info made me extremely nauseous and dizzy.
Looking back from a functional lens, I suspect this house had a mold issue that made everything I already had going on worse. It was an old college house that had squirrels coming to visit and burying their nuts into our things. My ballroom dancer partner at the time joked that they were rent paying squirrels. A little concerning from a health perspective though.
Once I moved out, I started feeling better, but still not my best. The neurological pain went away and the panic attacks slowed, but it still took about 5 years before I stopped having any panic attack episodes.
After all this, I just assumed I had "burned out." It became really hard to watch my old friends or new people in school have fun and enjoy life in a way that I knew I really couldn't keep up with. I became flakey, rejected a lot of social invitations, and I isolated myself a lot because I felt so ill. I found another friend in graduate school who had a similar personal struggle as I did, so we happily flaked on each other regularly due to our poor mental and physical health status.
Eventually, I accepted that this broken version of me is the new me. I was grieving the old me who was bubbly, energetic, and full of life. It was a very lonely experience to not only feel limited by my body at my age (I was still in my early twenties) but also experiencing a loss of my identity.
Turned to Psychiatry
At this point, I got some recommendations to check out psychiatry so I gave it a go. The doctor diagnosed me with ADHD and gave me Straterra, a non-stimulant, as I didn't want to go on stimulants since I was already told I was at risk for sudden heart failure.
While the drug did clear my head, it made me lose my personality, and the side effects were HORRIBLE. Migraines was a listed side effect and I was one of the lucky ones who got to experience it. Most likely, it caused electrolyte depletion (sodium, maybe magnesium) because the only thing that relieved it was salt and vinegar chips and black coffee. The other side effect I got was crippling arthritis. I was already prone to joint pain but within 3 months, I stopped going to the gym because of the pain and I began to feel joint pain just lifting into a seated position in the morning from my bed.
I told the doctors about this side effect, but they were convinced it was not related because it was not a listed side effect. However, once I got off this drug, my joint pain improved dramatically.
As a side note, if you have a new side effect from a drug- you should submit it to the manufacturer because there are exclusions on who can join the trials so it's not surprising that not all unique side effects will be listed. This is the encouraged procedure according to a loved one working in pharma, but ironically no doctor lets you know about this.
The Part When it Gets Better
At 26, I went to a local integrative doctor and finally received a diagnosis of Hashimotos as 26. That was the first time I felt relief because someone acknowledged my symptoms and gave me a label. She gave me natural thyroid medication, some vitamins, and said my blood work showed candida overgrowth but she didn't provide much guidance outside of that.
Eventually, I found healing in my husband which is another story in itself and then I landed on functional medicine. Functional medicine opened my world to understanding how the body works in unison and allowed me to get rid of certain symptoms that diet, lifestyle, or prescriptions did not. It also allows you to learn how to adapt your lifestyle to support whatever genetics you have that are slowing you down.
Being in the holistic world can still feel a bit lonely as well because few people in the big world understand it, but boy I would take what it offers over feeling what I felt at my worst any day.
Now,
- My digestion runs smoothly
- My joint pain is completely gone
- My mental health is more resilient
- The puffiness in my face went away and weight is stable
- I have energy and mental clarity to be a mom and run my own business
- Bad weather, a night of bad sleep, a less than ideal meal, or an alcoholic beverage won't shake me
- I'm not afraid to go out with friends or go on family events because I'm worried it'll trigger a flair
- My Hashimotos antibodies dropped dramatically
- My annual labs look great
- And the list continues
While my journey was long and it was lonely, I found my way and I wouldn't have gotten here without everything I learned along the way. If anything, the darkest of times gave me a greater appreciation for what I have now and I hope you feel that way too.
And if you're still dealing with the darkest of times, then feel free to reach out. You don't have to go through this alone and I promise there's a light at the end of the tunnel. You just need the right support and I'm here to serve if you need me.
If you are interested in learning more, then feel free to reach out on social media, email me at vikarutkowskibusiness@gmail.com, or schedule a free discovery call below!
