Homelessness in the Lyme Community


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Lyme Disease and Homelessness

An ignored aspect of Lyme disease.

Tonight one of  my friends, Jeri Dobson, who just started a non profit called, “Partners in Lyme”  wrote me asking me what the statistics were on Lyme and suicide and Lyme and Homelessness, as she wants to help those in need. It made me think about how there are no stats for either because noone is caring enough to study our community and what is happening to us. This is just sad. Since I already wrote about Lyme Disease and Suicide I thought tonight I would tackle homelessness.

I know personally a handful of people who are homeless right now  at this moment, living in tents with kids, living with no electricity or water, living in their cars. Some are bouncing from house to house relying on friends and family members to take them in for a night or two before they either end up in a cheap hotel or out on the streets. This is a crime. Noone should be treated like this, especially because they are sick.

At the end of this article will be patient stories of how and why they became homeless. Feel free to skip past my ramblings of “why” people become homeless and read their stories. Make sure to read the comment section too.

There are a couple reasons for becoming homeless when you have Lyme Disease.

  1. Lack of funds. Of course this is the most obvious one. When you are sick with Lyme disease you bounce from doctor to doctor, getting test after test trying to figure out what’s wrong with you. Usually you have depleted all funds and likely lost your job due to illness, before you ever even get diagnosed which can take months or even years. Once you get diagnosed it’s not much easier. Patients have to seek out “Lyme literate doctors,” as most mainstream doctors won’t treat chronic Lyme.  Lyme doctors usually do not take insurance and are very expensive because insurance will not cover their long term treatments thanks to the IDSA and CDC guidelines stating that Lyme is easily detected and cured with  a couple week of antibiotics.So to sum it up,  Lyme disease patients are having to seek out  Lyme specialists and paying out of pocket for expensive treatments protocols that go on for  months and years.  And this is not to even mention the bills that pile up while you are having to take time off work, pay your normal daily living bills, and take care of your children and family. If you want to see how Lyme patients are financially hit, check out all these fundraisers. 

Click on “View Results” at the bottom of the poll to see how many votes.

2.  Rejection from family, friends and spouses: Because Lyme disease is such a misunderstood disease, Lyme patients tend to lose those around them. Spouses give up on us, not understanding the mish mash of symptoms that we experience, one day being up and the next day being down. They start to question if we are really sick. Doctors say it’s all in our heads, making us look like hypochondriacs. We get accused of Munchhausen Syndrome if our children are sick. Family members start not trusting us. Friends drop off one by one as they get sick of hearing about Lyme, leaving us feeling abandoned.

People are used to diseases either getting cured by mainstream doctors, controlled with meds like how Diabetes can be controlled with insulin, or dying. Noone believes you can be “this” sick and still survive several years. Spouses, family members and friend’s lives don’t stop because our life has. They want to travel, they want to go to parties, they want to have holidays with family, the stress of not being well enough to be reliable and leave the house often leads to broken relationships.

Eventually you have noone to turn to. Your wallets are depleted, you are still sick and you have noone.  We asked Lyme patients is they feel isolated from Lyme and here is there answers. 

Click on “View Results” at the bottom of the poll to see how many votes.

3. Multiple Chemical Sensitivity:  This is one factor that people out of the Lyme disease community might not understand.  Lyme disease leads to conditions such as sound sensitivity, light sensitivity, and chemical sensitivity Things that healthy people don’t notice around them become intolerable to us. Many Lyme patients can not be around perfumes, colognes, candles, cleaning sprays, or anything that has strong odors. Fluorescent lights produce seizures or seizure like feelings and headaches. A simple sound like breathing or someone walking across the room can throw you into a panic attack. Sound causes pain in our ears and heads, almost like someone is blasting bass or yelling in a  microphone next to your ear. We have to live in a “clean” home and it is unimaginably hard to find one, especially n the financial distress we are mostly all under.  Read more about MCS here. 

Click on “View Results” at the bottom of the poll to see how many votes.

4. Mold:  Mold and Lyme disease just do not mix. Time after time we hear stories of how sick someone got after moving into a home with mold. If you have Lyme disease your immune system is already caput, but you add mold into the  mix and it can be deadly.  You never really notice how we are surrounded by mold, in our house, in our yards, in our cars… until you get Lyme disease. Most of us can walk into a room and we know instantly if there is mold present. We become so sensitive to it. Read more about the affects of mold on Lyme patients.

Click on “View Results” at the bottom of the poll to see how many votes.

These are just a few of the reasons some of our dear Lyme friends are becoming homeless. We would like to collect personal stories to add to this post. If you have experienced homelessness due to Lyme disease and would like to share your story please contact us here or for those who know me just contact me on Facebook. We will add your story here and any links to fundraisers you are doing. ♥

Article written by Lisa Hilton

Click on “View Results” at the bottom of the poll to see how many votes.

Patient Stories

“I did not have any assistance, no money coming in too ill to work, I had spent everything I had, I cashed in my CD, I had spent my savings on out of pocket expenses, MRI’s, countless doctor appointments that did nothing and refereed me to someone else, ER visits. (Long story short, ) I knew the funds would not last, I had enough for a plane ticket to another country, where I knew some people there. When I was there, I soon found myself homeless, I don’t remember all the particulars, which is good, but I remember my feet being really dirty.”
Keep Reading Tara R’s Story Here.

“I started seeking diagnosis, testing and treatment. I filed for workers compensation but was denied for 2 reasons. (1st) too much time had past, (2nd) I could prove the tick that bit me came from the injured deer. Fast forward to May 2015. I could no longer work. I have always lived on my own, I’m not married. I could no longer afford basic living expenses, not to mention medical expenses without employment I had no insurance.”
Read Shay’s Full Story Here.

Sarah’s Fundraiser to find a home.

Spread Lyme Disease Awareness and Help Support a Lyme Patient.

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