After a year and a half of treatment through several doctors, Matt and I chose to see the controversial doctor in Washington, DC. I will be on IV treatment for 9 months and then move to oral antibiotics. I was referred to Dr. Jemsek through another doctor because of my difficult case. Dr. Jemsek was a huge part of the breakthrough in the AIDS epidemic and is now the pioneer in Lyme Complex treatment. He refers to my disease as Lyme Borreliosis Complex, as it is not just Lyme, but a host of other co-infections contributing to the problem. This choice was received well with some, but not so well with others.
When you go through such a lonely disease, you get hurt when others don't understand.
It was less than a week after we moved into our new home in Fairfax. We moved into a townhouse that set near a beautiful big lake that I had not yet seen. For the last year and a half, I suffered from social anxiety and would not go outside much. Needless to say, going down to see the lake was not on the top of my list.
But... God had other plans.
He slapped this desire on my heart in an instant. I stopped unpacking or arranging and called to my kids. "Who wants to go see our new lake?!" Of course my kids were ecstatic, just by the fact that I wanted to take them outside. We shuffled quickly grabbing our shoes and headed to our back gate. I'd never opened the fence before, so it took a minute to figure out how to open it. As we walked behind the houses, the lake peaked up over the hill. We were all very excited as the lake came into full view. I noticed a young blonde girl carrying a baby walking on the trail heading directly into our path. We caught eyes and smiled, and then met on the trail next to the water. We naturally introduced ourselves and started chatting. It would have been impossible to avoid her, as our paths perfectly matched on the trail. After our 10-15 minute conversation I learned two appealing things about Elise: 1. She loved God. 2. She suffered from chronic illness. I was excited to meet her and come to know her.
Only God could set up this meeting with Elise, at His perfect perfect timing.
Over the course of the next few months, Elise would text me many days asking how I'm feeling. She would suffer many of the same symptoms, as she has been in and out of doctors and hospitals her entire 21 year old life with Juvenile Rheumatoid Arthritis amongst other illnesses. God had brought a friend into my life that ACTUALLY understood. And slowly I began to feel less alone.
Meanwhile, over the last 3 years my friend Karen had been suffering, recovering from the disease alcoholism. We had drifted away from each other in those years as we both searched for healing. The Lord directed me to reach out to Karen and I asked her to come over one day to catch up. We chatted about how the Lord had led us to where we are. Karen had been through a lot and a 2-3 hour conversation would not suffice. However, God did what only God could do for me. Karen looked at me with gentle caring eyes and said, "Sarah you are afraid of being seen as weak." Tears uncontrollably fell down my cheeks to my lap. My emotions were not as they seemed. I was a little angry that God would break me like this. I quickly reached my eyes wiping my tears, pushing them back into my heart. Believe it or not, neurological Lyme and Alcoholism are very similar in that the mental difficulties coincide. When I first learned about the difficult in healing Lyme, I desired to see a doctor in Florida. Dr. Rick Sponaugle originally treated addiction and has a phenomenal success rate in healing. He then started treating Lyme disease because his daughter contracted severe Lyme when she was 13. He treats addiction and Lyme in similar fashions in that they are both brain diseases. The Lord convicted me to allow this breaking and I called Karen that afternoon thanking her for her support and understanding. Our stories are very similar, and again my loneliness began to dissipate even more.
However, the loneliness would creep back in at times when I would take my eyes off of Jesus. Elise sent me a text during this time asking me for 2-3 ways to love someone with an auto-immune disease. She was compiling a list for her loved ones as they are supportive but sometimes clueless and confused. My response was out of bitterness...
- When I say I'm fine or good, know that it's almost never true. Prying a little helps me feel that you care and are interested. When I say my fingers are tingling, instead of always saying sorry and changing the subject since I don't usually add more information, asking further questions would be nice. Trying to understand my illness and why I've changed so much would be nice. It would make me feel less alone. When I say I can't make it, asking me oh no why, what's going on.... Would be nice. Asking me how my doctors appointment was would be nice. Sending me an encouraging text would be nice, such as, I'm praying for you or thinking about you today would be nice. Dumping your problems on me and minimizing my illness hurts. When I say something I did bc of my illness, don't say, oh I've done that!!! Bc I bet you don't do THAT everyday of your life. It makes me not want to talk. It makes me want to say "I'm good" when you ask me how I am. I know you care but I don't think you want to understand. I don't think you want to take on even a smidgen of my burden and even take it to prayer and give it to God.
Sharing my response is hard; it makes me vulnerable. I don't like to be vulnerable; but who does? Elise's response blows me away. The wisdom she has gained in her short 21 years of life can only come from the Lord. The Holy Spirit gave her wise words for me.
- Girl I can’t tell you how many times I’ve felt the same way, and my mom always says to me.. “You don’t need them to justify how sick you are. You don’t need anyone else to ‘approve’ of that fact. It is a fact. Don’t apologize for it and don’t let other people make you feel less for it.
- Reading that text, oh Sarah, my heart has been in the EXACT SAME PLACE.
- I told one of my friends the other day who asked, “how are you?” I answered , “Im tired baby, how are you.” She answered. “Oh girl me too, you have no idea how tired I am right now...” And in her mind, that is her capacity. Her capacity of tired. She has no understanding of what being tired means, when you are so tired going to the bathroom seems like climbing a mountain, or getting out of bed to shower, when your limbs feel too dead to pick up your phone to read a text, THAT is tired. I so understand your frustration!
- just remember, as NICE as it would be! you don’t NEED their justification. In reality, they will never understand where you are and why you are as sick as you are. They won’t understand your “No,” or “I’m too tired today.” they will think you’re silly for needing a nap, because they don’t understand, because they don’t have the capacity! BUT BUT BUT...your God, the Abba Father who made you, who formed you, who cares for you, he deeply and intimately understands you. And every one else's mistreatment, callus remarks, shallow sympathy is of no great weight because HE KNOWS. he knows so deeply. You need not even use words with your God. “The spirit intercedes for us through wordless groans.” Rest and let your spirit do the work.
Even now I cannot read her response without streaming tears. Between Karen's words and Elise's words, I feel less alone. I'm going to be more vulnerable. I've hid many symptoms for so long because of the lack of understanding from others. I'm going to allow God to break me and heal me. I'm so grateful God placed two friends in my life at the right time, to understand.
- In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans. And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for God’s people in accordance with the will of God.
- And we know that in all things God works for the good of those who love him, who have been called according to his purpose. For those God foreknew he also predestined to be conformed to the image of his Son, that he might be the firstborn among many brothers and sisters. And those he predestined, he also called; those he called, he also justified; those he justified, he also glorified.
- What, then, shall we say in response to these things? If God is for us, who can be against us? He who did not spare his own Son, but gave him up for us all—how will he not also, along with him, graciously give us all things?
Writing of Elise Shaefer:
How to Love Someone with an Auto Immune Disease
It’s not easy – we aren’t the easiest people to love. We so desperately try to be everything everyone needs – never wanting to fall short in anyway. Unfortunately, that is not our reality. Some days, we cannot keep up. No matter how hard we try.
We will have days where we end up in bed, unable to move, feeling defeated and beyond frustrated as our body attacks us. On these days, we need people who understand why we go from laughing and dancing, to crawling into bed. People who give patience when the day’s plans go out the window because we can’t muster the energy for one…more...step. We need people who are secure in our love for them, knowing our lack of energy does not equate to apathy. People who understand when we are near tears and inexplicably grumpy, maybe we just need a snack and a nap.
We don’t need you to understand fully – unfortunately, you never will be able to. No amount of literature or study will ever help you fully understand what our bodies go through on a daily basis. Don’t say “I’ve felt that,” or tell us, “Oh, I’ve done that…I know your pain.” Because the truth is, you probably don’t.
And that’s OKAY! We simply need your love. Without – we feel alone, isolated, and even more exhausted knowing none of our efforts will be enough.
We need people who love us in our perfectly imperfect state – knowing there is no cure, that it will not go away – that our immune system is as innate to us as or hair color or the way we laugh. We need someone who will love our immune system the way they love our personality. It is apart of who we are, but it does not define who we are.
I asked multiple friends and family member who have lived with and put up with me for many years, “What does it mean to love someone with an Auto Immune Disease?” Their responses brought me to tears.
Speaking firstly to couples, my favorite professor and one of my dearest friends wove together a beautiful slice of advice. Second only to my father, he is the most important man in my life. He has seen me through the worst and the best of my illness and has most recently watched my new relationship blossom.
I hope the following words from my dear friend touch your heart as deeply as they touched mine:
Love's perspective is guided by time...
The "new" and "unfamiliar" are the ingredients that propel intimacy in a new relationship. Couples should spend long, long hours exploring these unknowns and relishing in the accomplishment of just "knowing" and valuing that exercise of growing closer and experiencing intimacy.
Intimacy's offspring is ownership. It is because we are close that we feel we have a part
of each other that no one else has, and this is where it gets difficult. It gets difficult because in this stage we do not want to be wrong in our own personal assessment of the relationship, and when our ideal gets fractured even in the smallest degree, we end up upset because the relationship is not exactly what we thought it was and this is exacerbated by the desire to "set it right" or "place it back on the right track". The image we own gets stolen from us by our own pride, and this can happen even when the best motives are present. We do not like to "get it wrong" or misunderstand or cannot seeming meet the needs of our love, and we do not like when our partner is unhappy, sad, sick, depressed, etc. Why? Because it is not the image that we have chosen to own. What must we do?
We must own another image, one that encompasses a relationship of varying phases of most everything including: intimacy, happiness, sadness, sickness, wellness, etc. Easier said that done? You bet.
My sweet boyfriend is a great blessing. I prayed for a man who would love me in spite of my chronic illnesses -- he loves me FOR them. He loves me in my adorable moments and he loves me even more in the EGR (extra-grace-required) moments. But there will be times when we both struggle to love in the way the other needs.
This reality bought to life ‘number one’ on my list:
- Choose to own an all encompassing image of your loved one – one that includes ever facet of their life.
In truth, my loved ones don’t need this list – they live these acts of love daily. I’ll take a leap and say your loved ones don’t need this list either.
This list is for the rare, grey days when our friends and family feel discouraged…when they just don’t know what else to do with us. I compiled these responses to remind our loved ones what a phenomenal job they already do:
- Sometimes doing nothing with her is the best way to love her.
- Listen - and ask. People with autoimmune disease don’t look or seem sick. It's not the flu or a broken arm. Ask your friend how she is feeling and really listen to her answer. And you may have to ask “What’s wrong,” a thousand times before you will get a real answer.
- Even though she doesn’t have the energy to do certain things, she will still want to do them. You may need to find a creative way to make those things happen.
- She doesn’t need you to baby her. She needs you to be the one person who treats her like she’s normal.
Sometimes she is just "done"...done talking, done engaging, done listening, just done. Do
- not try to figure it out, do not try to change it, and do not try to make it right. There is nothing wrong, and It is not personal It just is. She is recharging.
- Do not try to fix everything. We must be willing to let a dull, semi-unharmonious air hang in the room for as long as it needs to. We must admit we cannot meet every need, solve every problem, or right every wrong. The last thing she needs sometimes is us. Let her be.
- Sometimes she won’t want to be touched and no that does not mean she doesn’t love you. It only means she’s hurting.
- Make her laugh. Don't be afraid to crack jokes about it all, humor helps!
- She wants every part of her heart and body to be cared for, it’s fragile and has hurt – but is still so strong. You must take care to cover those sensitive parts with grace and love.
- Treat her to little things that make her feel happy or better - it could be something as small as food she can eat or a pair of slippers, or as big as a plane ticket for her to come and let herself be taken care of when she needs it
- When she can't beat it, join her. For a day on the sofa or a drive to the doctor's office. Autoimmune disease can be very isolating.
- Trust that the relationship is fine if she does not respond right away, text you right back, or call. She is fine, you are fine, and the relationship is fine. Anxiety is an itch you just cannot scratch, and the more you try, the worse it gets. Just trust her. She will bounce back before you know it.
- Acknowledge that you will never understand exactly what she is going through, and this is the toughest of all because you love her and want to know her fully. But on this one, you just can't. This means sometimes all you will be able to do is love her and just be there.
- She doesn’t need you to carry her on the days she’s too weak to walk. She needs you to stand beside her and remind her how strong she is.
We are strong because of YOU.