“If you love me, obey my commandments. And I will ask the Father, and he will give you another Advocate,who will never leave you. He is the Holy Spirit, who leads into all truth. The world cannot receive him, because it isn’t looking for him and doesn’t recognize him. But you know him, because he lives with you now and later will be in you.”
I live with my parents and 13-year-old son. In 2013, I was diagnosed with dysautonomia. Dysautonomia is an autoimmune disorder that affects the autonomic (automatic) nervous system. In other words, it can affect my breathing, my heart, and any other organ within my body. It will attack and weaken the organs it attacks. In some cases, it can lead to death. Doctors are still trying to find the right treatment for me because there are usually so many issues happening at the same time. The medications can be more harmful than the disorder sometimes.
I also have several other health issues intertwined but the BIGGEST issues are dysautonomia, fibromyalgia, depression, and spinal degeneration. Basically, there isn’t a day that goes by where I am NOT symptomatic or that I don’t have pain. I do not take pain medication because this wouldn’t help the fibromyalgia or back in the long run. Eventually, the doctor would need to up the dosage and that destroys the liver and other internal organs. So, I’ve had to find ways to manage the pain and do what I can in the moment I have flare ups.
For as long as I can remember, I’ve had health problems. When I was a teenager, people would just say the debilitating fatigue was a “teen thing”. I would do the normal stuff teens do and I loved to hike and play volleyball the most. I was a regular in the worship team at church. I studied music performance in college and I wanted to be a singer so badly. If I wasn’t going to sing professionally then I wanted to have a backup in music so I could teach voice lessons or be a school teacher.
When I became a young adult, I ended up not being able to work because my back was so bad and my ankles were damaged. I could not sit up or walk. I spent my time in a recliner or bed. It was a very difficult time for me. Here I was…twenty-something and I couldn’t drive, go out with my friends, go to church, or enjoy the physical pursuits I loved before.
I would get better but then I’d get sick or injured again. It never ceased. Sometimes I’d be in remission for years and sometimes only weeks. I never knew what would happen from one day to the next. That hasn’t changed.
However, the absolute WORST part about chronic pain and illness is the loneliness. The ones who were once your closest and dearest friends no longer stop by just to say hi. They don’t call to invite you to go places anymore. They get tired of hearing what they see as excuses. Family members distance themselves and are busy with their own issues and lives.
This has a negative affect on the one who is ill. They are faced with their own mortality and thoughts. They can become self-absorbed, demanding, and bitter. The illness begins to morph into its own identity and they begin to believe that the illness IS who they are.
Even though I have battled with all of this, and still do battle with all this, I recognize that the loneliness is not the fault of my friends and family. At least, not all the time. Yes, some do avoid me and distance themselves. However, I think this is done because they have so much going on in their own personal lives. It’s hard watching someone they care for go through something they can’t fix.
I’ve had to learn that I’m not alone. I have had to learn to recognize it’s not up to other people to define me or make me happy. That’s a HUGE burden for anyone to bear. It’s also downright dangerous. When we place our hope in other people, we will be disappointed at one time or another. No one is perfect.
The only one who can truly bring comfort and peace is Jesus. He understands what it means to be lonely and alone. Can you imagine…hanging on that cross and bearing the weight of EVERY sin committed, being committed, and that will be committed in the future? At that very moment…God turned away from His Son and let Him die. I have such a hard time grasping that but I know it was done.
Those who know Jesus and trust God are NEVER alone. The thing is, if I feel like talking…I can talk to Him. I can tell Him anything and KNOW that He hangs onto each and every word. He is that confidant I can confide in, that friend I can laugh with, and that encourager I long for.
I am happy to say that I’m not alone. I have God with me and He has surrounded me with friends and family who do help me, pray for me, and encourage me. I have a few friends who see me every week. I no longer look at visits I have where I’m trying to find what I can get out of it. I look at these visits as opportunities to encourage others, make them laugh, and just enjoy the companionship we have to offer each other.
I am never alone.