Recently, I was sitting with a couple whose child was recently diagnosed with Lyme disease and a few other tick-borne co-infections. As we were going over various resources that were available to both the patient and the caregivers, it dawned on me just how much it takes to get someone through the process of managing and overcoming a chronic illness. Some supports are there from the very beginning, others join but then fall away along the path as the patient destines towards health and wellness.

For Maine’s Lyme community, it takes a village — and we are your tribe.

We, the Lyme literate providers who, with their knowledge and experience and continued education, stay by your side every step of the journey. We, the secondary supports, who accent your healing through Reiki, massage, acupuncture, etc. until your body can manage on its own. We, the advocates who have been where you’re at and who have pledged to surround you with hope and encouragement to stay the course towards healing. We, the fellow patients who sit beside you in the support meetings and share of our own failures and successes while on our journey seeking healing. We, the friends and family of the afflicted, who pledge to check in on you and offer support any way you need, be it cleaning the house, walking the dog, replenishing groceries or providing a cooked meal because we want to see you reach your destination of healing.

It takes a village and the more people that rally around the afflicted, the less weight the illness becomes, for the burden is now carried by many. It takes pressure off the patient and allows them the much-needed rest to restore healing to their body. Treatment for a chronic illness such as Lyme disease, made worse by the presence of a co-infection, which is far more common than people realize, can reduce even the strongest, most organized person to chronic bed rest, overwhelming physical pain and cognitive impairment. When one is able to rest during treatment, the recovery is much faster but patients are not always afforded such luxury. As a parent, you might have children to tend to and as a child, school work, but as the illness takes over, all this falls to the wayside without any control. Spouses step up, siblings step up, family members rally — whatever it takes to get it done.

Special accommodations for school work that falls behind. Reduction of work hours to allow for continued employment. Sometimes it’s obvious what the need is and other times our pride hides the fact that we’re struggling and in need of help. We, the patient, try to control a disease that refuses to be broken and harnessed and it fights us every step of the journey that we are on. Country music singer Carrie Underwood sings “Jesus, take the wheel. Take it from my hands, 'Cause I can't do this on my own”. Sometimes we know when we’ve been beat. Sometimes, it’s as simple as letting and crying out for help to relieve us of the tension of trying to hold it all together. Chronic Lyme is not something that you can manage on your own or any chronic illness for that matter. You need your supports in place to carry you when you can not carry yourself. You need your village.

It amazes me to see the evolution of a person once they receive support and encouragement. When someone comes into our support meetings for the first time or comes to listen to one of our talks, to see the change take place within them when they realize they have found their village. They have finally connected with people who can not only validate but provide resources that they need to get better. I see it every week. As a patient, you need to see first hand that you can get better. It goes a lot further than your doctor telling you that in time, you will eventually get better. Some will not because something very important was overlooked and in need of attention. It could be an undiagnosed co-infection or simply the information on the importance of diet change or the need to rebuild what was destroyed or damaged in the treatment process. That’s for your village to do, to rally around you and uplift you and give you hope and inspire you to carry on, when you feel like isolating and giving up.

If this is you or someone that you know, please know this — you are not alone. We have been through it and we will help you get through it too. Whether you are the patient or the caregiver, family or friend, we are your village and we are here for you every step of the way.

Paula is the president of the MLDSE, the Maine-partner of the national Lyme Disease Association, member of Maine’s CDC Vector-borne Workgroup, active in Maine’s Lyme legislation and a member of the Access to Care Services and Patient Support subcommittee of the Federal HHS Tick-borne Disease Working Group. You can reach her at paula@mldse.org