Chronic Illness - My Perspective
What Chronic Illness Can Look Like
This might be a bit lengthy, but I feel it’s important to share this. Several months ago my sister texted me and told me that I should start watching The Real Housewives of Beverly Hills. She said there was a lady named Yolanda on there that was sick just like me, that talked about health just like me and was going through the same healing treatments just like me. She said I had to watch. So I started to tune in.
Yolanda is battling Lyme disease. I started to watch the show and I listened to her talk in depth about her health journey. I also started to read about her health journey. When I would listen to her I found that I was familiar with all the treatments she was undergoing, and I recognized her top doctor in Seattle, who was a doctor to one of my health practitioners. The things that she would describe, the feelings that she expressed, all of it - I seemed to relate to most everything she was going through. I watched as she was questioned relentlessly about her chronic health issue.
How could she have a chronic health issue if she put up a photo on Instagram of herself and she was smiling and having fun at a party? Is Lyme even a real disease? The medical profession says 'this' about Lyme and so she can’t possibly be that sick. She’s too put together and looks too pretty to be as sick as she is.
She’s feeling good one day and then claims to be sick the next day – she can’t possibly be that sick. Some even claimed she was faking it.
Those that attacked her clearly did not understand what Lyme disease was, how serious and debilitating a disease it is, nor did they seem to have an understanding of what chronic health issues looks or feels like. They do not understand and have not experienced this type of chronic illness - and I pray that they never have to fully comprehend it either. I would never wish that on anyone.
I have to say while I write about chronic illness, that I have always been an extremely healthy person. I don't get sick and my body is strong. So to go overnight, from being healthy and strong to dealing with a chronic, misunderstood health issue - was difficult. Just like Yolanda, I have also felt the doubts circling around me, and felt the sting of misunderstanding - your liver can't do that, I'm not sure adrenal exhaustion is a real disease, you're just depressed, vitamins couldn't make your body react that way, taking vitamins are useless for the body, mercury fillings are not harmful, you don't need detox support because your liver works just fine, you look just fine, and life has to go on, you just need to get over this.
Many offered opinions and medical diagnoses or dismissed certain diagnoses on my behalf that were completely unfounded. It seems many thought they knew best or knew better than I did about what could possibly be going on with my own health, when really they knew nothing about the reality of what was happening to me. It was hard being so terribly sick, and dealing with this as well - just like Yolanda did. I quickly learned that I had to set boundaries and surround myself with positive people if I was going to heal. I will write a little more about this later on.
I would like to comment though on one aspect that has been so miraculous and beautiful. During my illness, I was also surrounded and loved by many that stepped up and helped me, even when we didn't know what was happening. Old friends and new friends. God surrounded me with world class professionals and a support system to get through my illness. I could see his hand in bringing together so many people to help me - and he lined it up even before I got sick. So many acts of kindness were extended to me. We had just moved prior to me getting sick and perfect strangers in my new neighborhood all prayed for me. New friends quickly became cherished friends as they sat with me and my family as well and lifted us up in love and kindness. There were even some health professionals that I knew, that didn't initially have a knowledge or understanding of what happened, but they listened, got educated and changed course because of what I went through.
So back to Yolanda. I listened to her story of the absolute pain and suffering she has endured and I truly related to just about every word she spoke. I got it. I listened to an interview she gave on Dr. Oz one day and just broke down sobbing. I felt like I related so intimately to this woman that I didn’t even know, who was on TV talking about how her illness has impacted her and how at times she struggled to want to go on. I felt her pain in a way that most others couldn’t. I have felt so alone in my illness. Where others have support groups and such to get through debilitating illnesses and diseases, I had been navigating alone, researching, putting the pieces of the puzzle together and searching out and finding the professionals across the country that could help me - just like she did. It was the first time that I felt connected to someone else that had an understanding of the hell I had been living through.
Lyme and what I have gone through have a lot of similarities. Some of them include: memory impairment/loss, sensory hyperarousal, autism like syndrome, severe brain fog, neurological disturbances, debilitating fatigue, flare up of dormant viruses, inability to properly detoxify because of genetic methylation issues, which can all turn into a complete loss of hope for getting well. I’ve purposely left out some of the even more severe similarities. I wanted to reach out to her and just hug her and cry together. I didn’t care who she was, or how famous she was, I knew we would have a common understanding and a knowing – almost without even needing to explain.
What Is Chronic Illness?
Chronic illness is defined as any disorder that persists over a long period and affects physical, emotional, intellectual, vocational, social or spiritual functioning. Chronic illness has been isolating. Particularly because what specifically happened to me is not understood by most doctors (more on that later), and my illness was difficult to initially define and diagnose. It was hard for me to learn about and understand, and do it all alone while my brain wasn't functioning properly. It’s been complicated and a lot of times because of that, I just didn’t talk about it with those that weren’t in my inner circle.
Chronic illness is confusing. Chronic illness can be misunderstood. I get that and I understand that. The purpose of this post is to help others understand what chronic illness CAN look like and to help facilitate understanding and more compassion for those that suffer.
This is a picture of Yolanda Hadid, someone suffering from severe chronic illness. She looks perfectly healthy and happy. She even got up and spoke at this major event.
This is a picture of me about 5 months into my illness. I was also terribly physically and neurologically sick in this picture. Wouldn't ever know just by looking.
Everything May Not Be As It Seems
I remember one afternoon I was driving over to meet with Dr. Isaac Yosef in Scottsdale for the first time. I was on the phone talking to my friend Alison Huston. She also sees Dr. Yosef and is one of the people who spoke to me about going to see him when I first became sick. She was on the phone with me as I drove over, giving me encouragement and saying such kind words. I was crying when she called and was not feeling well. She happens to follow me on Instagram and said in a puzzled tone that she had no idea that I was still so sick. She said that just looking at my Instagram pictures, I looked like I was doing just fine. It had been a year since we had initially spoken about my illness.
This is another thing I’d like to to talk about. Everything isn’t always what it seems looking in from the outside. I think good advice for us all – listen more to people’s stories and their hearts and judge less. I know I am guilty of this as well, but I certainly try. Going through this illness has given me a whole new perspective on other people and their health trials – so much more compassion, patience and understanding.
I personally have not worn my illness on my sleeve. I haven’t wanted to. I will freely talk about it with those that have genuinely sat down with me and wanted to learn, but until now, I haven’t put it out there for discussion. Mainly because I’ve been so consumed by just trying to heal. My focus wasn’t on educating others, my sole focus was surviving and healing. That has been my full time job for three years now.
I have dealt with it for every minute of every day, and conversely, there are times I just have wanted to not deal with it – if I can. Sometimes I just wanted to feel normal if I was having an hour or a day that I was not struggling to get through. That’s why I haven’t shared everything. I’ve wanted to just look at my Instagram or other social media and feel happy and inspired by the things I see on there – not stare my illness in the face all the time.
I don’t put up pictures when I’ve had a particularly bad day on Instagram. I did put up pictures when I was having a good day, or a good moment. Those were memories I wanted to be reminded of. I have removed some pictures that were too painful – when I was not feeling well at all in the picture.
Two Steps Forward and One Step Back
Chronic illness has a lot of looks. There were times when I couldn’t even get myself fed or barely showered, let alone my hair done while I was so sick. Then there were the days that I could. That is chronic illness. There were a few good hours or days in a row, and many bad days in a row. The days started stretching out into more consecutive good days, and then I’d have a crash and be out for a few days, a few weeks or even months. Until recently, I’ve lived day by day, not knowing how I will feel each day. I’ve literally gone to bed and I wake up not knowing if I will be well or if I’ll be functioning the next day. This last summer my health has stabilized more than in all of the last three years, except for a doctor induced hormonal crash the most part of August.
I think this is why some types of chronic illness can be so misunderstood. But you look fine. How can you be so sick? I saw you last night and you were fine. How can you be so sick today?
I’ve had to keep on living. I have four children and a family. When I would have an afternoon that would feel better, I would go out and try to do something. I would keep moving when I could, and a lot of times, even when I couldn’t. The next day could have felt horrible and could have been unable to do anything, except try to get through the day. When I got to the point where I felt I could try to go out (about 5 months into my illness) and I had an evening that I was feeling ok, I would go to an event. The next week might have been excruciating. Sometimes I even put a smile on when I could, even faking it a lot of times just to try to reclaim some of my ‘normal’ life. I’ve craved that feeling of just ‘normal’.
It was a big deal when I was actually able to go out to events, because for a long time I was too sick to go out. If you saw me out at a social event with other people though, you can be assured I was having a 'good' day. There was no way I’d be out socializing with other people that weren’t my family, when I wasn’t feeling well. In my early sickness, even when I thought I might be up to going out, my body was too unpredictable. At any given moment, my brain would stop functioning very well and my body would completely crash, sometimes in a matter of minutes.
When I started to have some good days, it was difficult to make plans or even hold functions at my house because I didn’t want to have to cancel on people because one day I was doing ok, and the very next hour or day I was not. This was really hard, because I love having people over for a party or a BBQ, swimming, movie party etc. My house is always the party house. That came to a halt when I first got sick and for a long time afterwards. It was hard for everyone. Many close to me didn't understand this. I had this beautiful new house with a backyard that I enjoy so much, and I didn’t want to hold parties or plan holidays at my house. The older kids could entertain and do whatever they wanted to do because they could manage the party, but if I was the host, I didn’t do it.
It was impossible to know if I’d be feeling well on the day of the event and it was excruciating to have to entertain when I wasn’t feeling well and I was neurologically offline. As well, when I wouldn’t feel well, in addition to my brain not working properly, my nervous system could not handle all the stimulus of a large event. The noises, the sounds, loud TV, commotion, all the activity was all too much for my nervous system. Sensory hyper-arousal is one thing that is misunderstood and difficult for others to understand if they haven't experienced it. I'm going to talk about this in detail in another blog post. There were times when I’d have to go in my room and just shut the door when a lot of people were over and the house was really loud.
My life turned into spur of the moment planning. Hard for us, and hard for others, as they didn't understand why I wouldn't schedule much. How would I schedule to have people over and then at the last minute cancel, or suffer through it not feeling well, or go in my room to shut it all out when I'm hosting a party?
As I said previously, I’ve been doing much better in the last few months and feeling better about scheduling some things. It’s been a new way of life for me. It’s definitely improving though.
More Compassion and Understanding
All along, I’ve appreciated the kind words when people would ask how I was doing. I knew they were just caring, but often times I avoided answering. I didn’t know what to say. It was months, then a year, and then two years, and people would ask me how I was doing and most of the time I could give them an …. “I’m ok.” Some would ask further, you’re getting better right, or they would just assume I was better because I looked fine and was walking around functioning on days that I could. It was hard to explain. I could see the confusion in their eyes. Some didn’t quite know what to say. Often I would say, 'I'm improving." If you got an “I’m doing good” out of me….I had made significant improvements by that point, (past the year and a half mark) and was having a good run.
So I share this in hopes that we all might have more compassion and understanding for those that are chronically ill or recovering from a serious illness, even when they look just ‘fine’ or we don’t completely understand their illness. Perhaps be a little slower to judge and a little quicker to love. We can never go wrong with a kind word or extending kindness to someone. Love is the ultimate healer. And to those that struggle with chronic illness and struggle to find answers, keep praying and keep searching and keep believing. Keep having hope, even when you feel hopeless. Hope will come and answers will come. I've been there.
In hope and healing,
Deanna
