"Invisible" Illness: Perspective and Help
Living with a chronic illness is challenging enough. The fatigue, sleep disruptions, brain fog, and pain often involved are incredibly difficult issues to contend with... but what if you look OK on the outside? What if the people in your life don't give you the support and understanding of someone who LOOKS physically ill? The challenge just compounds itself. Conditions that are considered "invisible" are fibromyalgia, chronic fatigue syndrome, severe anxiety and depression, hormonal imbalances and autoimmune conditions. Often times, and in large part women, people that struggle with these chronic conditions look well on the outside but suffer tremendously internally.
My personal story with this is a battle with Poly Cystic Ovarian Syndrome (PCOS). From the time I was in college until my late 20s, I struggled with a variety of difficult symptoms without fully understanding myself what was going on. For YEARS, I was tired constantly, had trouble loosing excess weight (in spite of doing "everything right"), and just felt fuzzy a lot of the time. I had strange neuropathy symptoms. I even thought I had MS at one point. Although I believe now my symptoms that seemed neurological in nature, were mainly B12 deficiency and blood sugar issues related to the PCOS. I just didn't 'feel right' a lot of the time.
It was hard to describe however. I remember trying to tell my family and friends that I just knew something wasn't right. They were skeptical. Since I battled with my weight, I frequently looked chunky and I was told that I just needed to exercise more. This was always so difficult for me because I did exercise. I battled with disordered eating on and off trying to loose weight. It did not matter what I did as far as diet and exercise were concerned, I just never felt right and I was never as lean as I thought I should be (which is a topic for another blog post). My various doctors over the years usually didn't offer much help. My standard blood work always looked normal. At one point I was dealing with frequent colds, so I was put on antibiotics. The cycle just continued without any real resolution. I remember once seeing an endocrinologist who basically brushed me out of his office when I tried to explain what I was experiencing. He just didn't take me seriously.
After I turned 30, my husband and I decided to try and have a baby. I had been on the pill since my early 20s. I had regular periods only because of the pill. I didn't know this, until I stopped taking it. As soon as I stopped taking the pill, I had no periods. Nothing for more than 3 months.... At that point, I seemed to be validated that something wasn't right. It certainly wasn't normal for a woman to not have periods right? My OGBYN confirmed that yes, this was not healthy or normal so she did a deeper dive hormonal panel. Turns out I had the markers for PCOS. She then sent me for an ultrasound of my ovaries and that confirmed that they were cystic. I was told by the technician that I would "need help" getting pregnant. As much as this was devastating, I was also relieved that there were other clear signs that my body was very out of balance, and I got a diagnosis that I could work with.
From there I did a lot of research. I consulted with various other professionals that included my GP and a nutritionist. I had learned that blood sugar imbalances can be a contributing factor to PCOS. My OBGYN suggested I take Metformin. It is a diabetes drug that would help keep my blood sugar in check. I decided to take it for a bit, but I really didn't want to be on conventional meds long term (which is always a personal choice one way or the other). My nutritionist suggested I go on a lower carb diet that included almost no sugar. Even though I thought was eating healthily, for most of my life starting in high school, I subscribed to the low-to-no-fat diet. So if a food was low fat, it was healthy to eat (i.e. Snackwells). Eating fat makes you fat right? Ugh. This diet approach was likely a huge contributor to my PCOS. For all those years, I deprived my body of one of the critical building blocks to healthy hormone production - dietary fat.
Switching to this lower carb, no sugar diet while adding in healthy fat was a game changer for me. On this new diet along with the Metformin, I was pregnant within months. I had also seen a fertility specialist who wanted to put me on Clomid almost immediately. I decided to hold off, and luckily I did. I feel so grateful that I was able to get pregnant so quickly and easily. I recognize that for many women, this just doesn't happen. It is something that I am always mindful of and never take for granted.
With the experience of my own personal story and now as a Yoga Therapist I can offer some suggestions when dealing with a challenging invisible illness:
***Get help from a variety of professionals: Luckily, I believe the awareness around these illnesses are getting better and there are more and more alternative or integrative health professionals that are dialed-in, and know what tests to run - and they will actually listen to your story. As was the case with me, a lot of the standard blood panels won't pick up on more subtle hormone, adrenal, or thyroid markers that could signal a root cause or point to areas to address that might make a big difference in symptom management. I personally have had dutch hormone tests, nutrient testing, stool testing, and thyroid testing that you just don't get through a GP (usually). These tests can be expensive however. But they really can make a difference in determining underlying issues. It is worth shopping around to find a professional(s) that you trust and will actually listen to you in earnest. You may be able to take the tests one step at a time or space them out as needed to save on cost. If you are in Cincinnati, I recommend Alliance Integrative Medicine at www.myhealingpartner.com.
***Advocate for yourself unabashedly: This can be tiring but I believe it is critical. Keep asking questions, researching, being insistent on finding answers... it may take equal parts pushing and equal parts boundary setting. If you need to rest, rest. If you need to say no to certain things - events, activities, environments that aren't critical or aren't serving you, do it. You must take care of yourself first and foremost. I struggle with all of these suggestions still, but I'm getting better - and have gotten better over time. In many instances, women in this position are perfectionists and are determined to just plow through. This mindset will eventually undermine you. It's hard as hell, but take time to rest and take time to figure out what other solutions might be available to you to get well.
***Stop worrying about what other people think: This is also so hard and it is a practice. I have seen women who have been debilitated by these chronic issues and also debilitated in worrying about what other people think. I know it is so hard to not get support from loved ones and friends, doctors etc. This is part of the battle of invisible illness. But at some point, you will need to stop wasting energy worrying about what other people think. Keep asking for help and searching for support of course. I'm not suggestion to go it alone. However, all that matters is what you think. Period. I did an instagram post recently about inspirational reading. I believe tapping into other resources to change mindset around this issue can be really helpful. Some resources I can recommend to help develop this thinking are from Byron Katie, www.thework.com, and the late Anthony de Mello's book called "Awareness". Both of these authors made a huge difference in my perspective on this issue, as a life long people pleaser and someone who always worried about what other people were thinking about me.
***Don't be afraid to experiement with different treatment modalities: This also ties into get help from a variety of professionals. I also think it is imporant to experiement with different modes of treatment. Maybe it is herbs, CBD oil, acupuncture, yoga therapy ( ; ) ), massage therapy, essential oils, and so on. This can also go for conventional medical treatment as well of course. If you need to be on conventional medicine for a time, or even long term to manage the illness, do it. A good talk therapist may also be helpful. I think trying alternative treatments simultaneously is important too. Fortunately, there are a lot more options these days....I think it is worth experiementing with different options to see what works. Everyone is different, and I think it just takes time and finagling with different things to see what makes you feel better. I will also say that these modalities may shift with time. What works for awhile might change and you will need to adjust as you go. The healing journey is ongoing and continous, we usually don't hit an 'end' to it. Please of course, get qualified guidance as needed.
***Incorporate stress reducing activities: This is so important for both management of the illness symptoms and for managing the challenges associated with it as we have discussed here. It is a lot to deal with... difficult constellations of symptoms, exhaustion, self-doubt and potentially not a lot of support. You can be doing loads of other things to manage the illness but if the stress is not addressed it will be an uphill battle. There is so much talk today about self-care. And this is great. I know it can be overwhelming, confusing, and hard to know where to start with these activities (and keep them up). My advice is to do something, even if it is small to get into the habit. I did a blog post about habit change HERE with more suggestions on this. Maybe it is starting with a 1-2 minute meditation daily. Pick something small that you can take on consistently and start there. You can build onto habits once they are in place. I am also a huge believer in the power of breath in managing stress and taking the body out of the fight or flight response. With my clients this is often where we start. Get your breathing on track and everything might start feeling better. And this does not have to be complicated or time consuming. I also have a post on proper breathing HERE. Some people struggle with focusing on breath at first. If this is you, it is OK. Pick another activity and come back to breathing later. Getting good quality sleep is critical and a part of this too... it could be another blog post as well. There are a lot of resources on sleep out there, give it a Google.
As the years went on, I continued to tweak my diet and exercise regimen. I have had lots of ups and downs, and even though my PCOS is mostly under control, I still need to be mindful of how I eat and what lifestyle choices I make. Of course, I need to make the yoga plug here. I only wish I had yoga in my life earlier or at the time of my diagnosis. The beauty of yoga is its ability to to tone and shape the body in a healthy way, but it includes other practices such as meditation and mindfulness, that are so helpful in reducing stress. My body was in fight or flight mode a good majority of the time due to the hormonal chaos, and I didn't even realize it. Utilizing practices from the yoga tradition to help manage symptoms is great, but they also help greatly in dealing with the outside stress and pressures as well. We see it over and over in a Yoga Therapy practice.
This is one of my longest blog posts as I clearly have a lot to say about invisible illness. Many women struggling with this come to Yoga Therapy because they have tried so many other things that haven't really stuck.... I believe in the power of yoga of course, but it often does take many strategies to get the body back into balance. And it is possible - that is my overarching message. It is possible to heal and live a full and vibrant life, even with a chronic illness. Please reach out to me if you have any questions at all, or want to discuss how Yoga Therapy can fit into a treatment protocol for invisible illness.