When Family and Friends Don't Believe You

I've always said that dealing with Lyme Disease physically is only half the battle with this illness, the other half derives from dealing with society's perception about your disease. But for many, society's perception also entails dealing with their own family and friend's perceptions with Lyme. I had written a piece a little while back that was directed towards loved ones of those afflicted with this wretched illness to help them empathize and understand your daily struggle. However, for many, there will be a few people within your life who refuse to educate themselves on Lyme, leading them to becoming indifferent to your illness or even sometimes downright hostile. There will be a few Lyme patients out there who will receive all the support they could ever want from those around them, but that tends to be the exception and not the rule. Learning to emotionally cope and eventually ignore the hurtful noise surrounding you is an essential and necessary part of your recovery. Luckily from my own experiences and others, there are a couple strategies that may help you cope.

First off, if your family or friends have mocked you or made you feel like your illness is insignificant you are not alone. Sometimes it actually helps to take solace in the fact that the misunderstanding you're experiencing from loved ones is not an isolated incident within the Lyme Community. I myself had fortunately experienced great support from friends when explaining my illness to them. They all seemed to be genuinely interested in learning about my condition and why I suddenly became bed-ridden. It also helped that my illness was visual, as the dramatic weight loss I experienced clued everyone in that I was not well. However, I'll be honest in saying I didn't initially experience the support I was hoping for within my own family. 

I'm an only child and have lost contact with any extended family outside of my parents. My parents knew I was ill at first, and went to great lengths to try and find answers to my condition. It took six months of being extremely ill before I was diagnosed with Lyme Disease. Upon the diagnosis my mother related my case to a friend who's husband had Lyme and how he fully recovered from Lyme within six months. She seemed certain I was destined for the same recovery, and my dad went with her assessment as well. I was extremely ill though, and could do nothing but stay on my computer throughout the days. I would constantly research my illness to learn as much as I could in the hopes of gaining an advantage towards my recovery. My parents didn't necessarily agree with my approach and at time would mock me and constantly make fun of the time I put into researching. 

It was hurtful, but what had hurt even more was hearing my mother on the phone with her friends comment about how I had no life now as if it were somehow my fault. Not getting better within the first three months didn't help my case of seeking emotional support. My father had made a comment that he no longer believed I had Lyme Disease and had even entertained the idea from a friend at one point that my condition was due to a mental illness. We sought out a second opinion at the Mayo Clinic together as a family. When the initial results for cancer after a myriad of tests came back negative, I confessed that I felt the Mayo Clinic would have no answers due to the fact I had Lyme Disease. He scoffed at that notion and then berated me for being so negative. Eventually I was right and Mayo sent me home with the CFS diagnosis we're all so used to.

Are my parents evil, maniacal people? No, they're not in the least bit. Were they stubborn, difficult and even a bit unsympathetic at times? Yes, without a doubt. The awareness behind Lyme Disease is in its infancy stage, and due to the limited understanding about our illness it takes extra effort on your loved ones part to learn about what we're dealing with. The fact that Lyme awareness is so low can be used as a scapegoat for family members who are afraid to accept the enormity and seriousness of your disease, as I expect was the case with my family. However, after a year they finally did come around when it could no longer be ignored. They weren't bad people who didn't care about their son, but since no parent wants their child to be very ill it became easy for them to hide under the cloak that society had put out that Lyme wasn't serious.

Unfortunately, not everyone's family will even handle it in the fashion that my parents did. My girlfriend deals with this illness as well, and though her parents have always remained supportive, the same can not be said for some of her friends and certainly not for most of her extended family. Some of her aunts' refused to even accept the notion that she was sick. When she would post pictures of us on the rare days she felt well enough to go out to dinner her aunts' would mock her and discuss how she was going clubbing and being promiscuous. This was hurtful, especially due to the fact she had a hard time getting out of bed, let alone finding the energy to somehow go clubbing. She would constantly try to explain to them what she was dealing with, but it often went in one ear and out the other. They treated her essentially as if this disease was a hoax, and would say disparaging things about her that no family member should ever hear. When one of her cousins was diagnosed with Irritable Bowel Syndrome the family rushed in to aid her cousin and acknowledged and empathized with how sick he was. But she's never received even a fraction of that empathy throughout the duration of her struggles with Lyme Disease.

It can be lonely and disheartening when you're going through relative hell and those people you cherish don't take you seriously. However, we've both found strategies to cope and though its not perfect, there are ways to better your outlook on the disconnect you may experience with those you love, and sometimes there are strategies to even help them understand more (though that's certainly not true for everyone). 

First off, as difficult as it may seem, over time you will have to learn to purely block and ignore the negativity that surrounds you. It won't come overnight, but it will happen if you continue to work at it. More than anything else you must accept the fact that you're seriously ill and the struggle you endure every day is very much real. Though it would be great to have the support from those you love, it may not come and that will be ok. You know how serious your situation is and that's what matters.

Second, make sure to utilize the Lyme Support Groups that are out there. This sounds easier than it actually is and I'll explain why. Lyme support groups, especially those that are online, can be very negative places sometimes. Those that hang out on those groups often tend to be the ones that have remained ill for awhile and could have a very negative outlook on their situation. Though they may need help and support, it's also important that you are in a good place as well. Sometimes, that means excluding yourself from as much negativity as possible. My personal suggestion would be to find just a couple of other Lyme patients through these groups who you can relate to and keep in touch with, who tend to have a positive outlook on their illness. No, everyone isn't always going to be filled with positivity every day, but it's important that they're not actually going to try to weigh you down. Online groups can be good for this, but try to find someone who is also within your zip code so you potentially have a person you could even meet up with at times so you have someone who understands you. Sometimes, in person support groups can be better for this, so try to find one near you. 

Third, I feel its important not to over-saturate social media with negative comments about your daily life and your illness. Yes, it's good to be open and honest with your friends about what you're experiencing but you can certainly overdue it to the point where they question the legitimacy of Lyme. These words sound harsh, but I have seen it happen. Though the conspiracy theories about this illness and how it originated may be true, it won't benefit you very much by continually voicing these things in a public setting. Do your best to convey your thoughts and feelings, but in a very calm manner. If they tend to not fully take to what you're explaining don't chastise them for not being understanding. You will likely have to just let it go, and maybe they'll be ready to take in what you have to say at a later time, but arguing with them about it will only turn them off from ever trying to learn.

Lastly I believe it's vital the you seek out therapy while you're on your path to recovery. Journeying through the road to wellness with Lyme Disease is one that will take you through an emotional whirlwind. Those close to you will often be unable to fully cope with what you're experiencing physically and mentally. I'd advise doing your best to seek out a therapist who is familiar with Lyme, or at the very least someone who is familiar with illness. My therapist didn't know much about Lyme Disease but did have a husband who had battled through stage 4 cancer. She actually became my number one support system, and I can honestly say I would not be here today without her guidance. Every week I would walk in with what felt like multiple boulders on my back, only to have them slide off of me by the time our sessions were done. You need someone who you can just vent to and get out the array of emotions this illness will take you through.

The message is that though it's hurtful to have friends and family neglect your circumstance, there's some positives that will come from this. You will forever know the true colors of those in your circle. This is the perfect time to see people for who they really are, and when you overcome Lyme Disease you will be better off without those people in your life. All you need in this recovery is your own confidence and positive outlook, along with just one person who you can talk to. Once you find that one person you can come to, then you're on your way to wellness.