In honor of Invisible Illness Week, I share this video with you.
In honor of Invisible Illness Week, I share this video with you.
I suffer from a chronic and invisible illness as do many of my readers. We all know how difficult it is to navigate through life with an illness that can’t be seen. It is difficult to convince others and often times those in the medical field that our symptoms are real; they are not something we have conjured up in our heads. As an adult dealing with chronic and invisible illness, I have learned to find my voice. I have learned to stand up for myself. It didn’t happen over night and it hasn’t always been easy. I cannot imagine what this is like for young people who are still navigating adulthood and may not easily find their voice and be able to deal with chronic illness.
Toni Bernhard, author of How To Be Sick and How to Wake Up, writes for Psychology Today. A few months ago, she posted a wonderful article entitled The Extra Burdens Faced by Young People with Chronic Illness. Toni’s articles are always very insightful. I have read How To be Sick and plan on reading How to Wake Up very soon.
For most of you who follow my blog, you already know my answer to this. You have heard me talk about it many times including a post I wrote, Layers of Fragrance. From the time a person gets up in the morning (and probably more so with women), they are putting layer upon layer of fragrances on their skin and at the same time adding chemical after chemical which is absorbed through the skin. From the shower products, to the lotions and perfumes, to the laundry soaps and fabric softeners or dry cleaned clothes, and lastly their perfumes or cologne, all those chemicals are slowly poisoning their bodies.
Their answer is that they smell nice and they like the way their shampoo leaves their hair smelling or the lotion leaves their skin smelling. They haven’t become sick (Or Have They?) so why give up these wonderful delicious smelling products. I say that they are having health issues that are not sending big signals that they are aware of. They may be having big health issues that their doctor isn’t able to figure out the cause of so they are given medications.
Thanks to a recent Facebook by my dear friend Jennie Sherwin, I read this article from Prevention. It just repeats what many of us who suffer from chemical sensitivity (MCS) have been saying for some time. The chemicals in all these products are indeed making us sick. Thank you Jennie for sharing this.
Or so the saying goes. This photo was on MCS Gal’s blog yesterday. The picture says it all to me! It is how I have felt many times, just plain invisible despite the mask I wore on my face when outside my home. I hope you will take a few minutes to visit MCS Gal’s blog and read this post. We need to keep sharing.
I should have already had my post done for 9/11 but I haven’t done it and the day is almost gone. My brain is fried from all that I am attempting to get done. Here is last year’s post.
I apologize for being so neglectful in these two very important items. So what has kept me so occupied?
My interview isn’t being recorded until the afternoon tomorrow so I hope to accomplish a few straggling things on my list tomorrow morning. Because I am not sure if the interview will be able to be viewed live, I will post a link as soon as I have it here.
Okay, I am done here for the night. Going to take my notes into the living room and right my last guest blog post while I wait patiently for the finale episode of Master Chef. While I can’t eat a lot of what they are cooking, I do love watching people cook.
I first shared this post on kindness on August 13, 2012. I have had many conversations with others about what I wrote in this post. I continue to try and live those words.
Be kind, for everyone you meet is fighting a hard battle. —Plato
I recently read this. Those are powerful words! I think in the midst of my battle for survival and the courage and hope to keep going, I sometimes forget that I am not the only one fighting a battle. Others are fighting just as hard. Their circumstances may be different but their battles no less frightening and painful than mine.
I remember sometimes when I would be in the midst of feeling so lonely, so isolated, so scared that I wouldn’t get better, my husband would remind me that “so and so” was much worse off than me. Of course, in the midst of my own hurt, I didn’t care if someone was worse than me. Those were not words I wanted to hear. It would make me angry. Angry at him and angry that my pain, isolation, loneliness and fear were not being taken seriously. Eventually I would calm down as the “fight or flight” action dissipated. Then I would feel bad that I hadn’t cared about the others, about anyone worse off than myself.
I am trying to not let my own situation overshadow all those who are also suffering. I am also trying hard to be kinder to myself and be more accepting of my limitations.
I recently read a very well written piece about being kind to ourselves. You can find it at: http://juliatuchman.tumblr.com/post/27924568863/pet-shop-prophet
Toni Bernhard writes for Psychology Today in a blog called Turning Straw into Gold. Toni lives with chronic illness. In fact she spends most of her days in bed with flu like symptoms that began over ten years ago.
I have read Toni’s book How to Be Seek: A Buddhist Inspired Guide For The Chronically Ill And Their Caregivers. This is a wonderful book about dealing with chronic illness and can be used by anyone. Toni has written a second book, How to Wake Up: A Buddhist Inspired Guide To Navigating Joy and Sorrow. In a recent post on How Not To Treat Yourself With Chronic Illness , she talks about how she treated herself when first diagnosed with chronic illness and states that this topic is expanded more in her new book. I have Toni’s book in my list of books to be purchased and read soon.
I first posted this on June 21, 2013. I quoted an excerpt from my book (in bold) where I said I had another of my emotional meltdowns. I was always having emotional meltdowns. I was over a thousand miles from home by myself and had been there for months already when I wrote this. I had also in that short time gone through a complete hysterectomy and my sixth sinus surgery.
I had another of my emotional meltdowns. I commented in my journal that “everything I do is really someone else or their perception of what I would want or need. The cards I send out are picked out by my daughter. The fabric for the dress I am wearing was picked out by someone else. It is nice but I am not sure it is something I would necessarily pick out for myself. It is just that this is supposed to be a special occasion and I don’t really have control over it.” This note started a long writing about how I was feeling (May 14, 2003):
I am not me anymore
The me that existed before this illness does not exist anymore
I am now bits and pieces of others and their perception of what I would buy, wear, or send
You see I must rely on others to purchase cards, clothes, shoes, and my food
The card you receive may have my signature and a short note – but it was chosen by someone else
The sewing or craft project I should like to do may be my craftsmanship – but the fabric, trim, and buttons are of someone else’s choosing based on their perception of me
I am not me anymore
What is there for me to do? It is no longer fun to create new craft ideas with materials I have not taken time to pick out piece by piece
I am not me anymore
I am lost and trapped in a world of emptiness and uncertainty
Who am I? I don’t know anymore; of one thing I am certain; the me I once knew is lost and may never return again
Who am I?
Somewhere deep within this body there has got to be a somebody that can care again
Somewhere deep in this soul there has to be something to want to get up in the morning and do
Somewhere deep within me there has to be found a hope for a better life
I feel as if I am slowly wasting away and disappearing all together
I don’t think the me I have known for many years will ever be back again. Too many changes physically and emotionally have taken place
I have to try and find out who I am now and learn to love and accept this new person as much as the old one
I must figure out a way to get what I need on my own
I need to figure out how to fill my empty days with something that makes me excited
My body is frail and thin. I need to build it back up so it can help me fight
I have got to find the strength to do this within or I will soon disappear deeper into the shadows
I am trying desperately to fight the battle
But at times it feels like it is a losing battle
This was taken from my journal when I was feeling so depressed at not being able to choose things for myself and I felt like I had truly lost myself.
A few days ago I had a phone conversation with my therapist. The conversation came around to clothes and style (not knowing what mine was) and wove itself back around to who I am. The conversation was about in the beginning of this illness everything including clothing was purchased for me because I was unable to venture into stores to do my own shopping. My style became whatever was purchased for me or what someone else thought I would like. What prompted this conversation was because recently I attempted a short trip into a store with my daughter wearing my mask to find myself some shirts. After a few minutes my daughter mentioned all the nice things there were and did I find anything. I told her that I had not. She then came to me with things to try on; things I would never have picked out. I ended up with one shirt. The dilemma I have is that I really don’t know what my style is any more. What do I like, what do I not like, what is just so so for me?
I don’t need clothes for work because I don’t work outside the home. I don’t need fancy clothes for parties because I don’t go anywhere requiring such fancy clothes. I do, however, want to look nice and feel good when I go to a friend’s even if we are only sitting in their backyard playing cards. Yet I don’t know what I want.
As my therapist and I continued our talk she talked about how she had clothes for her counseling work, clothes for her volunteer work, for her gardening, etc. Those were all different styles. I needed to think what I do and then try to find a style that fits what I do. I understand the concept but still don’t know what I like or don’t like. I don’t have any idea of what really fits me well because I don’t go out, try clothes on and buy them like I did before being ill.
Maybe we really aren’t who we think we are? Because at any moment a tragedy or life changing event happens and we are no longer the same person because of these life-changing experiences. We also talked about how we are all constantly evolving and changing either through our careers or in my case through my illness. Then it dawned on me! Back in the day before I became ill I was constantly changing curtains, pillows and decorations in my home as I changed and my likes and dislikes changed. Even back then I was changing and evolving. The same thing was happening with my clothes. While I get the idea, I am still struggling with what my style is. Maybe some day I will know but then again maybe I won’t. I am going to have to surrender to the fact that I may never clearly know what I like or don’t like. This may be a direct relationship to my illness and my now very apparent difficulty making decisions of any kind.
My questions to you readers are: Do you know your style? Do you truly know who you are in terms of determining a clothing style? Do those of you with this illness have the same struggles? Do those of you who are not struggling with multiple chemical sensitivity or other illnesses have this battle?
In May I placed a post entitled, Who Are We? In that post I included a snippet of a poem I wrote about identity loss. Today, a little over a year after this post, I still can say that I don’t truly know what style I am in terms of clothes and I still struggle with making decisions.
Not too long ago I posted a letter from a doctor. The letter was an open letter to patients with chronic disease from the perspective of a doctor. There have been many posts and discussions on my blog and on the blogs of others who suffer from chronic and often “invisible” illnesses.
Recently I came upon this Open Letter From A Person With Chronic Pain featured on spine-health. The letter could be adapted easily to any of a number of chronic illnesses. The content of this open letter is something I am sure many of us have said to ourselves, openly to someone else, in a poem reflecting our pain or loss, or in a blog post. I am passing it along to be included with the other letters and thoughts that many of us have shared as a result of becoming chronically ill.
I have mentioned so many times about my isolation. I have also mentioned that I have become strong enough that I can make a 20 minute journey (only with my mask on) into Target to grab an item or two as long as I don’t make a habit of it. Usually I don’t go by myself unless it is very early in the morning and the store is pretty much deserted. Recently I needed two graduation cards and my Seventh Generation Laundry Soap. I got up early and headed for the store. I managed to get the cards without a problem. Then I needed to get my laundry soap. The problem is that all laundry soaps are in the same area (including my Seventh Generation) along with all other fragranced household products.
As I made my way towards that section of the store, I worried about a reaction that might render me brainless and coughing and gagging. When my daughter or husband is with me I just stay a few aisles back and let them fetch my soap. Hmmm. Suddenly I saw a Target employee. I said, “Excuse me. I need some help.” He asked what I needed and I pointed to my mask and said that I have a very hard time with chemicals and could not go to the cleaning section to get my soap. Without any hesitation he asked what I needed and went off in search of my soap. A few minutes later he returned with my exact brand and size. He told me not to hesitate to ask for assistance any time I needed help.
Fast forward and I have made a quick trip with my daughter to pick out some party supplies and leave. Suddenly I hear someone ask if I need help getting anything. I turn around and see the gentleman that helped me weeks before. I said I was fine and he again reminded me that any time I needed assistance to feel free to ask for it. This made my day.
As we celebrate National MCS Awareness Month, I found it encouraging that not only did the gentleman help me but that weeks later he recognized me (Okay how could he miss me with my white charcoal mask with strings hanging down on the sides?), offered to help and once more reminded me that I should never hesitate to ask for help. While it is difficult to get out and do these short trips, I believe I am bringing some awareness to the plight of those suffering from multiple chemical sensitivity and environmental illness. I also I believe that I am showing my strength by venturing out in public with this mask covering my face, walking tall, and not allowing the mask and the looks on the faces of others to make me feel less than I am.
We who suffer with MCS and other environmental or “invisible” illnesses are much stronger than we realize. This is evidenced by the stance we take and the growing number of blogs and articles being written to raise awareness. We are STRONG and we will continue to raise awareness one blog or one article at a time. As I type this post, I am reminded of a song by Sister Sledge.
YES, WE ARE FAMILY!