Lost- A sense of losing one’s self

Last week when I posted Lost, a poem I wrote, I had no idea it would quickly become my most popular post. It seemed to resonate with many of my readers. The loss of one’s self seems to be a common occurrence with the chronically ill, especially at the beginning of the diagnosis. I have received many comments, messages, and have been asked by several if they can share my poem on their own blog. I was humbled by this. The words flowed easily as they truly came from the heart. I have struggled for months with this sense of loss. It wasn’t until I began seeing my therapist a couple of weeks ago that I truly knew what to call it. It was at that first appointment with AL that I finally learned what I was experiencing.

Loss of self, and the grief of the healthy me. It seems so simple now. These two phrases explain so well, what I have struggled so hard to explain to my loved ones for weeks, no months. The best I could come up with to explain it to them was to say: It was as if one day I was picked up and sat down in someone else’s life. There literally was this one moment where I went from being completely okay to where I was no longer the healthy woman I thought I was. I had to learn a new language, a new lifestyle, and even my social life has been impacted.

I still catch myself at moments thinking ‘Dear God please wake up, this can’t be me. This just can’t be happening.’ It has been an adjustment. I’m still not there yet. I don’t know when I will be there. I don’t know when I will truly find myself again, but I hope when I do, both parts of me remember one another.

Let’s talk about these differences Lupus and APS have brought into my life:

New Language

Once you get a chronic illness (or two), you get to see a lot of doctors. Once you start seeing a lot of doctors, you get to learn their language. I was ahead of the game in a way because I started my research well before my first official diagnosis back when we still were just suspecting a lot of things. Dr. D (my old PCP), was kind enough to light the way and warn me that this would be a good idea. He was right. Still I’m occasionally running into an abbreviation, or a new medical term that I have to stop and look up. I know more about my lab results than I probably should. As Dr. C says, I nit pick. This is probably not necessarily a good trait, but I’m hyper vigilant and I want to know things. I can pronounce my list of medications better than most of my nurses, and a couple of my doctors. I’m not the ‘average’ patient, I tend to research the crap out of my conditions, treatments, and tests that are ran. I’m a strong believer that we are our own best advocate as a patient. We have to be on top of things if we expect our doctors to be, that means being able to talk to them… so might as well learn their language.

New Lifestyle

It started off with the addition of a handful of meds and weekly lab visits and a monthly visit with Dr. D. Now that I’ve acquired a handful of doctors changed PCPs, now I’m seeing this whole Lupus/APS thing is definitely a lifestyle adjustment. I’m at Dr. C’s office weekly for my INR test, and now Dr. L has him running labs to make sure Imuran isn’t freaking my body out. Plus I have frequent doctor appointments with my other doctors. At least I like my doctors, I couldn’t imagine having to see those guys this much if I didn’t. Luckily Dr. C is the most awesome because I see him the most out of all of them. Yes my lifestyle consists of hanging out at my PCP’s office a lot. Enough that several of the nurses know me by name when they see me sitting in the waiting rooms (without my chart), the reception staff knows me by name and who I’m there to see, and soon the lab staff is going to know me by name because I must have the labs ran for Imuran every 2 weeks.  I should mention prior to getting sick, I hadn’t really been in a doctor’s office in a few years for more than something routine. I was much more of a holistic/natural remedy girl. This is culture shock to me.

Social Changes

I hesitated putting this here but it’s something that needs to be talked about. I’ve talked to AL about it at great lengths. She’s brought up some great points and I’ve mulled them over. Something happens when you get diagnosed as chronically ill, and it sucks. You begin to lose people. All of a sudden it’s no longer convenient to hang out, or they stop inviting you to things they use to invite you to. People that use to call and text regularly gradually stop texting or calling. I have had some people tell me why they can no longer be a part of my life, but for the most part over the last few months people have just distanced themselves from me. AL pointed out that a lot of people can not take having their mortality shoved in their face. I’m still young, and at the age of 30, I have a lot of friends that are relatively young as well. I can see her point, a lot of my friends probably do not want to face this. A lot of them probably do not know what to say, or are afraid of saying the wrong thing. There are probably a handful that misunderstand my illness as well and may mistakenly assume I am contagious, dying, or should otherwise be avoided.

With that said, I have a handful of strong, amazing loved ones that have stood by my side through the entirety of this ordeal. Those friendships are the ones I have chosen to focus my energy on. It is those relationships that have gotten me to where I am today, that was the case before I got sick, and that will always be the case. These people were largely the people I knew I could rely on in the past, and they have proven to be the ones I could rely on when things got really tough. They are the ones I know without a shadow of doubt I could call upon and they’d be at my side as quick as they could, no matter what.

What these illnesses have taught me is how to focus my time and energy on the ones that are there. Not on the ones that time and time again prove to me that I’m not worth their time. It has been a hard lesson for me to learn. I have had to think long and hard about who to let go and who to hold onto. I still hold on to some people I probably shouldn’t. The heart makes things hard, but the truth of the matter is, my social circle may grow smaller in number but it will grow tighter in the bonds that there.

Now comes the tricky part, being able to talk to people again. I was awkward to begin with. Since all this happened I have been having a hard time relating to people. Honestly there are times when I find it much easier to talk to my doctor than I do my own friends. At least I know why I am there to talk to him and what is supposed to be said.


With everything else going on, there’s still this overwhelming sense that I have lost myself amongst all of it. I went through this period of time where I stopped enjoying things. I didn’t watch the shows I liked, mainly because I was passing out on the couch every night at 7. Seriously I missed an entire season of NCIS and other shows!!!! To anyone that knows me, they will know how big of a deal this is! I stopped crocheting and making jewelry because it hurts my hands. I stopped brewing Kombucha because I don’t know how it’s going to interact with my medications. I haven’t brought it up to my doctors because I’m afraid I’ll be told no. Seriously it was like I hit pause back in August. I’m not sure what I was attempting to do. Life kept moving, and I kept moving but I was in survival mode. I did, survive, but that’s about all I can say for the last several months. Now here it is May, and I’m wondering if my inner self will recognize me once we reconnect.

When will my soul and my body be one again? That is a question I have been pondering a lot lately. I’m not comfortable in my own skin, I’m not sure when I will be. I use to be at home here. hopefully I will be again someday. That may be what it takes for my body and soul to connect again.




7 thoughts on “Lost- A sense of losing one’s self

  1. Nicole, you describe so well the things that I have gone through, myself. It is difficult to put into words. My whole world changed when I got my arthritis – the social side, too, as you say. Nothing about this is easy.

    I am a newbie to blogging, Nicole, and have mentioned you in my roundup of great blogs as I have found your writing so interesting and encouraging.


    1. Chronic illnesses are life changers and a lot of the changes are hard to explain to people that have experienced then or aren’t experiencing them with you. Thank you for including me in your round up! I will check it out when I make it back to my computer.


  2. I remember going to the doctors every week two and three times a week. I finally got regulated and I see my PC who now monitors my INR levels once a month! WooHoo! Still hate having to go even then. I see the Rheumy every six weeks. Pulmonary doc every three to four months. Eye doctor every six months because of the Plaquline. I stopped going to Othro docs cause I know I need to lose weight before addressing back and knee issues.The rest of the doctors are once a year. I remember thinking it would never end but it did.

    I didn’t have issues with my friends avoiding me. I was the one avoiding because I was super depressed. I guess it was different because I was in my late 40’s when I got sick, Now most of my friends all have some kind of health issues to deal with. That’s a fact of growing old for most of us. Your attitude is right to hell with those who choose to distant themselves you don’t need their negativity stressing your life.

    I like my doctors too. I change my vascular doctor because I didn’t like him and if my gyn pisses me off again I’ll change her too. 🙂 I’m in NY we have lots of doctors. 🙂


    1. I love my doctors, my PCP is the most amazing doctor I’ve ever met! There have been weeks I have seen him several times. We have learned quickly that vaccines cause me to flare. Already preparing for August and the upcoming flu-shot. He may send me home with Prednisone to be proactive this time after what happened with the pneumonia shot and the meningitis vaccines in April. LOL It took me two tries to find a good Hematologist and I have a DAMN GOOD Hematologist now. I see him every 3 months, but eventually I will only see him once a year or as needed. My Opthalmologist I see every 6 months because I am on Plaquenil and I also had a clot in my right eye. My gny I only had to see because I wanted Mirena and my PCP’s office didn’t insert them. I’m just getting established with my Rheumy but he is amazing and came highly recommended by the Hematologist and that’s why he asked my PCP to send me to him. He is top of his field in my area and assured me that he would take good care of me. He added Imuran to my meds list….I take a small pharmacy but hey it’s working.
      I was amazed at the reaction some of my friends have had. I definitely wasn’t expecting that I would lose friends over getting sick. But I guess it makes more time to focus on the ones that better deserve my time. Those that make time for me and stay a part of my life during this time of transition are definitely the ones that will be remembered and such once it is past. That may sound selfish but it is a matter of fact.
      I’m a firm believer that if a doctor isn’t working for you, replace them. That’s why my first Hematologist is no longer on my team. He pretty much gave me my APS diagnosis over the phone the day before thanksgiving and said ‘see you in three months. Then wouldn’t answer any questions I had. I quickly started the search for my new Hemo..and asked my Ophthalmologist, who was the first of my doctors to mention APS to me btw after he diagnosed me with the clot in my right eye in October…the clot had happened at the end of August but I didn’t know that’s what it was at the time. I thought it was an extended migraine aura. SIGHS.


      1. I was going to ask you if you had a rhuematologist. Don’t apologize for how you feel about your friends who are selfish to say the least. You are in the fight for your life so (insert 4 letter word here) them. 🙂


      2. I don’t make apologies or excuses for the ones that have proven to not be there for me. I will say though amongst my friends I have some damn amazing ones and some of them have proven to be some of the most amazing supports I could have ever asked for. For those individuals I truly am blessed. They are the ones that keep me going and remind me why I keep fighting.


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