At Little Glimmer of Hope Foundation, both my husband and I work with people who have Lyme disease in one stage or another. Many of these people are fighting for their lives.
Fighting and fighting and fighting. Through the excruciating physical pain, through the emotional fallout. Through the darkness and brain fog. Every. Single. Day.
It can be...traumatic.
Did you know that Cancer and Lyme disease have quite a bit in common? Lyme should be regarded as seriously as Cancer. Yes, really.
None of these precious human beings whom we work with asked for Lyme or did anything wrong to make them get Lyme. It's just something that happened to them against their will.
Being diagnosed with an illness that turns your entire world upside down is emotional to say the least. A large percentage of my job at Little Glimmer of Hope Foundation is to be someone who just listens to people who are hurting, and to offer them some hope and a prayer. Sometimes I'm on the phone all day talking people down from the rafters.
People die from this disease. Horrible, slow, painful deaths. It isn't a joke. It's not like a cold or the flu that you can just "get over".
One precious lady told me that never in her life has she felt so misunderstood. If you have Lyme, you get it.
Someone close to her told her to "Stop being so emotional about it."
To those people who are not fighting for their lives and who do not have Lyme, may I respectfully say this on behalf of my clients:
Every human being is born with emotions. Emotions are a part of your physiological makeup. We cannot simply "dismiss" them. If you could, you'd be a robot. If you feel something; love, joy, peace, anger, grief, frustration, glee, sympathy, horror, compassion, trepidation...these don't make you right or wrong. They are simply feelings. It's okay to express them, even anger and frustration; as long as you're not hurting yourself or anyone else.
For example, I can say to a person, "That makes me angry", without being disrespectful, name calling, or behaving in an abusive manner. Having feelings, or expressing emotion does not make you weak. In fact, not expressing them and holding everything inside can make you physically and psychologically sick. Having strong emotions after being diagnosed with a life threatening illness is normal.
Please, have compassion. Offer help. Step up to the plate and do whatever you can to make this person's journey easier. Make a meal, do some dishes, clean a house, bring some groceries, donate to their fund raising because Lyme is flat expensive. Tell your friend that you believe them, for pity's sake. How about reading a book on Lyme so that you can relate to what they are going through? Knowledge is power.
There is no cure for Lyme. Yet. And the journey to wellness is a long and arduous one. Some of us will be fighting this for the rest of our lives. It's beyond hard. We are not faking it.
Don't tell your friend or loved one with Lyme, “Oh, I know somebody who has Lyme, I’ll give you their phone number and you can talk to them!” That reply right there is just wrong on so many levels. It makes a Lyme victim feel even more alone because they just needed you to hear and accept them right where they are today.
I can guarantee you that the person who just found out they have Lyme is terrified. All or most of the things that they used to be able to do are gone now. Their entire life just changed. They need you to do more than say you care. They need you to prove it. Today.
When I was first diagnosed with Late Stage Lyme, some days I wondered if the tears would ever stop. Some days I was just angry at all the things going on within my body that were completely out of my control. It was the people who would just love me anyway that helped heal my broken spirit.
If your loved one has Lyme and they are crying, just let them. You've got to learn to be okay with how horrible this is. Just sit with them in loving silence if you don't know what to say. Asking if you can stay with them means the world to them – you have no idea how much your simple presence means. One of the best things you can do is to verbally remind the person with Lyme, why they should keep fighting.
Speak your love to them. Speak your strength. Speak your compassion. You are their link to normalcy.
Lyme can last longer than sympathy, but only if you let it. Please, be kind.