Nobody wants for it to happen, but it does. We can try our hardest to avoid being freaks and isolating ourselves, but then there are times when it happens anyway.
In this blog post, I will share some of my personal experiences with isolation as a result of illness, for two reasons: 1) I am feeling overwhelmed with feelings from it today; and 2) in the hopes of educating and sensitizing others to the plight of the seriously ill.
I cannot pretend to have a solution for this, or any answers. But I feel that even a kind and tender heart, who seeks to listen, have empathy, perhaps even be an advocate or help work toward solutions, is an indescribable blessing for someone in this situation. Maybe you will be one of those blessings. :)
What Causes Feelings of Isolation?
Those of us with multiple chemical sensitivities experience life-interrupting symptoms from pretty much EVERYTHING. Perfumes, shampoos, cleaning chemicals, deodorants, pesticides, air fresheners, candles, campfires, bug spray, sunscreen, paints, sealants...you name it, we probably react to it.
A person in this condition has to then choose between experiencing symptoms (mine are pounding headaches, burning lips/eyes/throat, extreme weakness, brain fog, anxiety attacks, even fainting)...or avoiding those chemicals which bring on symptoms.
How does one avoid those chemicals? Well, after finding a safe place to stay (a separate traumatic and problematic issue), some with MCS choose to simply stay at home. Church services, parties, weddings, social gatherings, cookouts, group camping...everything social means people, and people come complete with their fragrances and chemicals, which cause us symptoms. Staying at home means missing it all. That is definitely isolating.
#2: Wearing a mask.
I had been told by a caring friend that they hated to see me withdraw from social life because of my MCS, to curl up on a rock in the middle of the ocean to get away from it all. It was largely because of this comment that I decided I didn't want that to happen either, and I chose to start wearing a respirator mask.
Wearing a mask is socially isolating in a different way. It allows a person to be around other people (though large groups of people and many stores are still problematic for me, just less so than without the mask).
However, it means being a "freak" in the midst of the people. It means looking different, people wondering why you are wearing it, thinking you must be a germophobe, or the like. It means people staring when they think you don't notice, avoiding direct eye contact, laughing, mocking, etc.
It is a very lonely feeling to be with people and yet, have such a huge obstacle to the simple smile and "hello" that makes us feel valid as human beings. This is isolating too.
#3: Trying to "grin and bear it".
There are those who choose to participate in social life without a mask, despite having MCS. These people simply live with the consequences of unpleasant symptoms due to frequent exposures to problematic chemicals.
As I sit outside in the fresh air on our RV lot on the water, I generally have good air that does not cause me symptoms. Unfortunately, since I live in a community with many wonderful people, those people come with their chemicals.
The other night, my head started pounding, and I looked up and saw a new neighborhood couple in the street, and identified the gal's (very pleasant-smelling) perfume as the chemical causing my headache. My husband was out there meeting the new neighbors. Part of me didn't want to be anti-social, but most of me was screaming, "Run away!" So I did.
Another evening, an older neighbor was wearing a strong cologne, and visiting with a neighbor a couple of doors down. I was getting serious symptoms. I suppose I could have put on my mask. But I actually really hate wearing the mask, and I go outside so that I don't have to wear it. So it feels pointless for me to be outside if I still have to wear the mask. I choose instead to take a walk and find a spot along the water, out of the wind that is blowing their chemicals on me.
My across-the-street neighbor has recently been getting work done to prepare his RV for hurricane season. The treated wood that was being used caused me severe symptoms, and this was going on over a couple of weeks. My solution during this time was to sit at the end of a wind tunnel created by my truck and the wall, where wind came through at a high enough speed that I was not bothered by the chemicals being released by the work at my neighbor's place.
The thing is, you can't just ask people to stop living their life. Unless a person has MCS, it is rare that they will understand the extent of how their living affects me. And that is fine. We had to stop camping because we couldn't just ask everyone with a campfire to not light it because I have MCS and react to the particles released by the fires. I mean, that's what people do when they go camping. So...one more way to be more isolated.
#4: Being too tired to explain or get away.
The extent of damage to the body caused by mold and lyme illness means people are experiencing majorly debilitating symptoms. We are tired, worn down, exhausted from trying to cope with endless symptoms, try new things, etc. It is really life-draining.
When there are problematic chemicals in my neighborhood, I've got a beach very close by that I could drive, bike, or even walk to. Unfortunately, I am too tired for any of that. So I just stay here and do what I have to do to cope.
Could I talk to my neighbors about it and explain, and would they try to help be more sensitive to my situation? Possibly. But the thing is, it is tiring to explain. And since nobody knows about it really, that would be a lot of conversations. And a lot of negativity, because every time I explain it I re-feel the sadness and frustration around it all. Often, doing something creative and fun seems more therapeutic and beneficial to my healing.
As I reflect on it, it is very difficult to have a conversation with anyone without the mold/MCS/Lyme thing coming up. It is my everyday experience. It affects everything. Because of this, internet interactions with "strangers" is sometimes easier.
I suppose my neighbors must think I am a total recluse. I am too tired to participate in any social events, and I know they will be filled with perfume and problematic chemicals. So I sit on my computer or dance or eat on my RV lot in the fresh air. I've explained to some of my neighbors, but most of them probably don't "get me"... ("Why don't you participate in some of the social events if you are lonely?")...Yes, I am isolated within my community, by choice, but not really by choice.
#5: Important, thus stressful, social events.
A very important social event is coming up, one that I cannot miss. But what's to be done?
I cannot digest food. I am currently living on juicy fruit and green juices. The juices take 2 hours to make each morning. I am extremely low energy. I either wear a mask in public or I experience debilitating symptoms. I do poorly in hotels, which often have mold problems. I do poorly in airports and airplanes, which are small places with lots of people and their chemicals. I haven't the energy to drive anywhere. My husband is my caregiver in many ways, doing our shopping, and making my juice when I am too weak to do so.
How can I travel to an important social event? The thought of it brings on a huge amount of stress, which of course is not good for health. I certainly could not do it myself. My hubby has no vacation time left; he's used it all to deal with ramifications of our mold ordeal.
So flying it will be. What will we do for my nourishment in an unknown place? We currently are using our RV fridge and two coolers to store the veggies for juicing. What about in a hotel? And spending the day at the event?
And what about the fact that I am not supposed to wear my mask, so as not to be a distraction to others? Outdoor occasions should hopefully be fine, but what about indoor occasions? Much more complicated.
And what about being asked to find another place to use the bathroom, if my digestive issues might cause unpleasantness to the other guests? I do not have the energy to get in the car and drive somewhere every time I need to go to the bathroom, which is a lot.
It is really a tough road to walk. I know I have been at events where guests using the bathroom obviously had digestive issues, but what are you gonna do? People have issues, that's why they put air fresheners in bathrooms.
I can understand event organizers wanting things to go smoothly, wanting everyone to be able to focus on the point of the gathering, wanting people to be able to have a good time and enjoy themselves.
Unfortunately, that leaves those of us with issues in a tough spot. I have dear friends and family with Crohn's disease who find themselves quite isolated because of the need to always be near a bathroom, and the energy and stress of planning around this. My digestive symptoms are thankfully not that severe (since I began green juicing and juicy fruit only), but I've got other symptoms that make life difficult socially.
The emotional pain caused by knowing that my situation is a burden to deal with hurts so deeply. I so don't want to be a pain; I want to be a blessing. But I just can't help it. I'm under unimaginable stress, doing everything I can to get better...but I'm still sick. And I'm so sorry that it affects you too. I really am.
#6: Help (that isn't help) from loved ones.
Most of us don't like to hear people constantly complaining. We are affected by it; it brings the energy of the atmosphere down.
I really have a hard time with conversations these days, because I don't want to be complaining. On the other hand, people don't really understand the extent of what I'm dealing with.
My friends, family, and acquaintances want to help. They want things to get better for me. They have suggestions and opinions, and they share them with me.
Unfortunately, for someone as sick as I am, the "help" doesn't stop. It just keeps coming. Even when I try to talk about other things, I get advice on how to "fix" my problems.
It's great; I'm glad people want to help. But most people don't really know how to help, because they don't understand all the complications with which I am dealing. So it can be extremely tiring to explain over and over and over why I am doing what I'm doing, that yes, I've already tried that, or no, this is why I am not going to try that, etc.
When it happens with those who are close to us, it can be extremely emotionally stressful. Of course we love our close friends and family and want to enjoy good relationships. But when they apply pressure to do certain things (doctors, medications, etc) because they love us (but don't really understand what we are dealing with), it can be easier for the sick person to withdraw, rather than have that sort of traumatic conversation again.
I have friends who have lost their families, because of Lyme and Mold Illness. Family members can get weary of everything "going wrong", the constant sickness, the demands and special needs due to the health problems. It is extremely sad, because as worn down as the family is, the person who is ill is worn down too. And just as the family needs support in their lives and positive interactions to keep them afloat, the person who is ill desperately needs your unconditional love and support.
#7: Increasing isolating factors.
As a person with Lyme or mold illness or MCS gets sicker (things often get worse before they get better, and recovery, if it happens at all, can be an extremely long process), isolation can increase.
MCS can grow to include sensitivity to electromagnetic frequencies (EMFs). These are everywhere in our world today...inescapable, except out in an isolated desert where it is difficult to survive. Those with EMF sensitivity can grow to be unable to tolerate the use of a computer or cell phone...our source of interaction with the world. Talk about isolation.
Cry? Most definitely. Give up? There was another suicide in the Lyme community last week. Someone who had been fighting to recover from the illness for so long, and couldn't take it anymore.
I pray that by reading this post, you will become aware. And the next time you meet someone who says they are dealing with toxic mold, Lyme disease, multiple chemical sensitivity, or EMF sensitivity, that your heart would be softened, you would be quick to listen and offer a hug or supportive words or prayer.
Sometimes we just can't fix things that people are going through. But I believe that by offering your support and empathy, you will contribute to their healing, by giving them a little more strength to face the endless struggles in everyday living.
And maybe reading this will help you understand a little bit more, that person who seems like such a recluse and runs away when you draw near to talk. You have no idea what they may be dealing with.
Instead of criticizing or getting angry, perhaps you will consider that they may be dealing with something really tough that has nothing to do with you. And maybe you can offer up a prayer for them, and a smile and wave the next time you see that person.
It could totally change their day. Maybe even save their life.