Invisible Illness

This week is National Invisible Chronic Illness Awareness Week.  It runs through September 14th. It was suggested to me that I write about my experiences in dealing with my illnesses, and I will – perhaps at a later date. Instead of looking within myself, I thought I would broaden the scope of my focus and talk about an invisible illness that has hit close to home, and changed how I live my life.

To have a loved one succumb to an illness is one of the most painful things imaginable – and that pain applies to friends, as well as to family. What is even worse is when that illness is new, uncommon, or even invisible. This is what has been happening to my friend, Colleen, who has Multiple Chemical Sensitivities, a crippling disease that has rendered her disabled.

I must admit that sometimes I don’t feel like I have been a good enough friend to Colleen. To understand why I say this, you have to trace the story back years ago when she was first telling everyone about her condition. Colleen would say something to me like my cologne was giving her a headache, and I would brush her comments aside. I doubted her and I shouldn’t have.

Multiple Chemical what? I would think. Isn’t that just another way of saying “allergies?” Everybody has allergies. So what’s the big deal?

At first, it sounded like she didn’t like the fragrance I was wearing, but everyone feels like that from time to time. It was possible that she was pickier than other people. I knew that some scents bothered me – and some gave me a headache, too – so it sounded like more of the same. I didn’t take her seriously. No one did. I guess just about everyone else felt the same way I did because, even though she told everyone about her illness, no one did anything to help her. She didn’t look ill. She didn’t act ill. So, how could she be sick?

It took a while, but some sense finally crept into my head. I listened to Colleen. I looked at the facts and realized that MCS was real. It began to affect her life: she couldn’t go certain places or do things that average people take for granted because she was constantly getting exposed to chemicals in our environment that caused her to feel weak or sick. After a while, she couldn’t work because her work environment wasn’t safe.

I would visit her at home and notice that some days were better than others for her. A few times, she couldn’t even get off her couch, and there were times that I am sure she tried to put on a brave face just so I wouldn’t worry so much. Still, I could tell – friends  can tell.

Getting together wasn’t easy. In fact, it has been downright frustrating. It almost sounds like a comedy routine, if it weren’t for the fact that this is a very serious matter. You see, I have tried to eliminate as many chemicals as possible from my life, with very limited success. Especially frustrating has been the routine I had to follow to try and get the chemicals out of my clothes.

I have entire sets of clothes (summer and winter) that I only wear to Colleen’s house. They are sealed in a plastic bag in my bedroom. I had been washing them in a special soap which she gave me. It was supposed to be environmentally pure, but that never worked.

On the day I was to see Colleen, I would not shave. The shaving cream might make her ill. I would take a hot shower using a bar of soap that doesn’t make her ill. Then, I would drive to her house wearing my first set of “safe” clothes” with the second set in the plastic bag. I had to do it this way because on the drive to her house, my first set got contaminated by the odors of the car. A simple five-minute drive had contaminated them.

Once I had arrived at her house, I would head straight into the bathroom, and change into the safe clothes, putting my old clothes (now contaminated) in the plastic bag, sealing it and placing them outside the house. The process was even more “intense” in the winter.  I had to leave my coat, gloves, etc. in the car and make a mad dash for the house in sub-zero temperatures before entering to make the quick-change. (I didn’t wear a hat for fear that it would contaminate my head more than my addiction to Fritos and Reese’s Peanut Butter Cups had already done.)

Month after month I would go through the process and somehow they remained “scented.” We only recently discovered that the only way to “detoxify” my clothes was to wash them in baking soda, rinse them in vinegar, and then hang them to dry. They could not go in the clothes dryer because it was contaminated from chemicals from previous laundry. Until we discovered the washing and air-drying method, I would go through all those steps, put on my safe clothes and Colleen would still say “Nope. Still contaminated.” I wanted to punch something. Here I would do just about anything for a friend, and it still didn’t work. It didn’t dampen her spirits, though. After that happened, she would just smile and say how I had worked harder than anyone else to solve this problem, and it was too bad that it hadn’t worked. That really didn’t help me much.  I still felt frustrated.

I asked myself if I was being selfish for having these feelings, and the answer always came back “no.” I didn’t feel bad because I had to go through all these steps. I felt bad because they didn’t work, and that made it difficult to see Colleen. I didn’t want her to go through anything more than what she already was dealing with. I didn’t want to be part of the problem; I wanted to be part of the solution. Still, Colleen never seemed to feel bad about what has happened to her. In fact, sometimes she acts like it is a gift: that she can see things other people can’t, and her job is to spread the word. I admire that.

I admire someone who can act positively in the face of “negative” events. I admire someone who can alter their life and set new goals. I admire someone who can face a challenge with dignity and strength. Colleen does all these things.

Does she ever complain? Of course. We all do. But most of the time she is busy trying to spread love in the world – and what could ever be better than that?

I have seen Colleen twice recently, and both times we had good results. She didn’t get sick, and we were able to talk face-to-face. But that doesn’t mean that the problem is solved. The world is becoming a dangerous place for her – and for everyone. Unhealthy chemicals bombard us, and we seem to ignore this. One can only hope that the future will be better.

Yes, Colleen and I still meet and discuss our work and our lives, and things are better now that I have figured out the “laundry situation.” But one frustration remains for me: I just wish there was some way I could cure her. I wish there was some way I could take away all her pain and make her life as wonderful as possible. But as Colleen would probably tell me, I am looking at life the wrong way – that the Universe has put her on a mission and it’s going to be an amazing journey!

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About Joe

Freelance designer and writer whose goal is to help others by writing about my experiences with fear and anxiety (agoraphobia), health struggles (cancer) and my wonderfully-happy life as a husband and stay-at-home dad. I want to empower everyone to have a happy life.

21 responses »

  1. […] greatest gift a friend can give is TO BE THERE. So here is the link to Joe’s Journey having a friend with […]

  2. Colleen says:

    Reblogged this on Life in the City with a Future and commented:
    Thank you to Joe and every friend and caregiver — who has dug deep to stick by someone with an Invisible Illness — you have proven that real love is indestructible.

  3. Colleen says:

    You’re the best Joe. I am truly blessed to have a friend as wonderful as you. 😀 I feel very visible to day.

  4. Reblogged this on sondasmcschatter and commented:
    COLLEEN IS MY MCS SISTER & PRAISE GOD SHE HAS A GOOD FRIEND LIKE JOE!!!!!!!!!!!!!!!

  5. Reblogged this on allergictolifemybattle and commented:
    I loved this blog post so much that I had to share it. Colleen, you have a wonderful friend there.

  6. I have just reblogged this post as well. Colleen has been a great supporter of mine and I am so glad to know her. You are great friend to share this wonderful blog post about such a wonderful woman.

  7. linda says:

    Thank you Joe for not giving up! The world need more people like you ❤

  8. linda says:

    Reblogged this on Seriously "Sensitive" to Pollution and commented:
    What it can be like having a friend with MCS… from a real friend ❤
    "I would go through all those steps, put on my safe clothes and Colleen would still say “Nope. Still contaminated.” I wanted to punch something. Here I would do just about anything for a friend, and it still didn’t work. It didn’t dampen her spirits, though. After that happened, she would just smile and say how I had worked harder than anyone else to solve this problem, and it was too bad that it hadn’t worked. That really didn’t help me much. I still felt frustrated."

  9. Sarah says:

    You are BOTH amazing. Thank goodness there are people like you two in the world. 🙂

  10. Dorothy Valone says:

    As someone with a severe fragrance sensitivity, I really appreciate it when my friends try so hard. I know how difficult it is to accomodate someone like me. I just wish it were easier to find uncontaminated products.

    • Joe says:

      I agree. It would make life so much easier for everyone.

      • AnnaMarie says:

        I could use a friend like you Joe. God bless.
        My son started using highly scented detergents and dryer sheets. It was so powerful I could not get within 10 feet of him without getting dry heaves and sudden illness. My BF took some of my son’s clothes and washed them. He said even after 3 washings they still literally stunk of perfume even to him. This stuff is totally toxic. And it makes me sad that a scent can literally ruin plans and even relationships. You really know where you stand when your son says “You can’t come to the bus station to see me off because I will be wearing cologne and hair products you can’t stand”. Basically I was uninvited from being in my OWN truck. I hate it when my world gets smaller. Theres nothing wrong with us. This stuff is poison.

  11. […] It’s What You Can’t See that Hurts You (steppingoutwithanagoraphobic.wordpress.com) […]

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