My Hope for the Lyme Community

The Great Need for Hope in the Lyme Disease Community

The Lyme disease community is a pretty dark place. There are countless stories of people who’ve suffered for decades, nearly gone bankrupt in paying for treatments, have lost marriages, jobs and lifestyles along the way, only to have achieved little to no progress in their health. While every case may not be that devastating, most chronic Lyme sufferers’ lives are significantly impaired.

Occasionally you see a story of someone coming up with the right concoction of herbs, diet regimen and fill-in-the-blanks that somehow helped them get better. But for the most part, the Lyme community seems to be full of people who suffer almost endlessly. In fact, it’s not at all uncommon for people to develop a host of new issues as a result of a long-term Lyme disease infection so that their issues increase and become even more complex. And if that isn’t depressing enough—many Lyme sufferers also develop significant mental health issues to boot.

Why do I reiterate all of this negativity? Because I am trying to show the need for hope in the Lyme disease community. So please let me share my deepest hopes towards that end.

1.) I hope for more unity, appreciation and acceptance of chronic Lyme disease in the medical community

One of the  hardest parts of chronic Lyme disease is the controversy and divisiveness in the medical community regarding its validation, treatment and even diagnosis. Most Lyme sufferers are dismissed by mainstream medical doctors as not having Lyme disease and are told they either have something else, or worse, that their illness is in their head. Thus patients must seek out Lyme-literate doctors who accept the reality that Lyme disease can last for a while and cause ongoing symptoms and thus must be treated as an active infection.

Having your pain and symptoms dismissed by a mainstream doctor is extremely discouraging and can be damaging to the morale of a Lyme sufferer. If doctors can’t even figure out what’s going on with your body, you can feel extremely isolated and afraid. Fortunately there are more mainstream doctors who are starting to accept the reality and complexity of ongoing Lyme disease and at least try to validate and listen to the pain and issues of sufferers.

2.) I hope for breakthroughs in treatment for the complexities of chronic Lyme disease

One of the greatest challenges in the Lyme disease community is the process of treatment. Even amongst the Lyme-literate medical community, there is great controversy and confusion over the best methods of treatment.

My hope is for more cohesive treatment protocols that can encompass the complexities of co-infections, candida, mold toxicity, and other related issues as a result. I also hope for more straightforward testing so that Lyme disease bacteria can be more easily identified, understood and diagnosed.

3.) I hope for treatment protocols that are covered under all insurance

Another huge challenge to chronic Lyme disease is the financial burden it creates. Most Lyme specialists are out-of-pocket and require monthly visits and many of the treatments they prescribe are costly and uncovered by insurance. Even those who use antibiotics face difficulties with long-term coverage. Without insurance actively covering Lyme treatments, the monthly sums add up quick.

The other challenge with costly treatment is that many Lyme sufferers can’t hold a full-time or even part-time job, making it stressful and difficult to even pay their bills let alone afford such costly, ongoing Lyme treatments. I sincerely hope that these challenges will be addressed and that insurance companies start to cover comprehensive Lyme treatments.

4.) I hope for more awareness to the seriousness of Lyme disease in the general population

I really don’t believe that most people understand or appreciate how serious and destructive Lyme disease can be. My hope isn’t for people to be panicked about it, but for the general public to start reverencing Lyme disease for the monster that it is and taking those who suffer with it seriously.

5.) I hope for people to appreciate the physical, mental and emotional struggles that people with chronic Lyme carry every day even when they can’t “see” it

Piggybacking off my first point, I desperately hope that people will start to appreciate the incredible effort and struggles that those with chronic Lyme disease battle daily.

When someone is paralyzed in a wheelchair or has cancer and is going through chemotherapy, people respect the gravity of the situation. While Lyme doesn’t put your life at risk the same way cancer or a paralyzing disability can, the treatment process can be just as rough and life-altering to endure. Unfortunately people don’t give those suffering with severe, chronic Lyme disease the same credit that they give cancer sufferers or disabled peoples.

I hope that people will start to appreciate and understand the extent of suffering that those with chronic Lyme around them endure—despite how “fine” they may look. I desperately hope that people can start to appreciate how much energy and effort Lyme sufferers expend daily for even the simplest of tasks. One of the best things people can do to support Lyme sufferers is appreciate how limited and affected a Lyme sufferer’s entire life is by this disease and give them more encouragement and credit for what they are able to do.

6.) I hope for more prevention on a larger scale or a way to deal with the rapid spreading of Lyme

Lyme seems to be increasingly spreading and it’s becoming harder to recognize and diagnose, especially when there is no rash. My hope is that there are breakthroughs in ways to deal with infected ticks, or combat Lyme disease at a base level, so less people are even at risk in the first place.

7.) I hope for people in the Lyme community to grow more hopeful and positive

In spite of the difficult reality of chronic Lyme disease, my hope is for Lyme sufferers to look past their pain and hold on to more hope and find peace.

I realize that my situation is mild in comparison to some of the horror stories I hear about amongst other sufferers. I know there are those whose entire families are debilitated with Lyme disease, unable to work or take care of each other and experiencing symptoms that regularly send them to the emergency room for relief. It breaks my heart to hear about how some Lyme sufferers have had to carry the weight of their illness without the financial or physical support they need and are losing the hope to go on another day. My heart truly grieves for all of those suffering in ways even I can’t imagine from a disease that the mainstream medical community won’t properly recognize.

My hope and prayer is for God to do wonders in the Lyme disease community. I pray that sufferers will find an enduring hope, more tangible support and acceptance from others, better ways of coping in the midst of pain and more appreciation for the small things that those suffering can still enjoy.

My Final Hope

While this post addresses a lot of needs and not a lot of answers, I believe that hope can always be found no matter how dark life gets. As a believer, my hope is ultimately found in Christ. While the needs and challenges in the Lyme disease community are real, I believe God is more powerful still and able to work wonders. I know of people who have been healed completely of their Lyme disease and have emerged stronger and more alive on the other side.

Still, whether healing comes in a miraculous instant or takes many years, God is willing and able to sustain all to choose to trust in and rely on Him. While I hope to experience many years of wellness in my life, even perfect health and prosperity can’t fill the emptiness that a relationship with God can. And ultimately, whatever leads me to cling to him most wholeheartedly is the path I want for my life.