So, I have totally steered away from discussing and writing about the reality of trying to have a marriage, well any relationship really, while dealing with chronic Lyme disease. Why? Because it is TOUGH. In most cases, I feel like a failure and I feel guilty. I know, I know. It isn’t my fault I’m sick and I don’t choose to be sick. But still. All these feelings get tossed around. Many times, I feel like my husband and I just can’t speak the same language.
He’s been awesome, don’t get me wrong. But after 4 years of this illness and not a lot of progress, I think we are both just stuck in how to move forward. How to be more accepting of the chronicness of my illness, and then how to accomodate what comes along with it. We aren’t doing too great of a job, honestly.
I guess like Trump said about being president, “I thought it would be easier.” I thought figuring things out as a couple would be easier than it feels like right now. We are talking and discussing all kinds of things so I think that’s a good sign. But I’m still scared sh**less and freaked out about it all.
I don’t want to lose my husband and my best friend. I want it and US to work but I don’t have a clue what that might or should look like.
Any advice or wisdom you can share? It would be much appreciated!
Anyway friends, I hope your Sunday was and is a joyous one. Peace.
As a recently inducted member of the Chronic Illness Club (CIC, if you will), I joined several online support groups. And now, 3+ years later, I see many posts about this topic. Many times, as Chronic Illness People, we struggle with how to respond when someone asks us how we are doing. Why do we struggle? Because all of the time, most of the time, there is some pain or symptom(s) we are dealing with at the moment. So when we are asked this question, we feel trapped. We debate on what we should say: Should I say “I’m fine” even though I really am not? Should I say “I’m good” and hope that next time, if I say I am not so good since chronic illness symptoms wax and wane constantly, the other person will understand? For those who have never had nor been around someone with a chronic illness, it sincerely can be a difficult thing to understand completely.
If you have a chronic illness, then quite possibly I am preaching to the choir about the misunderstanding part. And many times, as members of the CIC, this is where we can severely get bogged down in these encounters with our unrealistic expectations, our over-analysis, and our misconception that there is a lack of empathy from others. Yes, there are times we will have encounters where the other person does not meet our minimal expectations,where this other person does not empathize at all. But I hope I can convince you that these negative encounters are or will be guaranteed to be few and far between after you check out my tried and true tips! So without further ado…..
3 Tips for Responding to “How Are You Doing?” :
1. “I’m OK, how are you doing?”
While this may seem like is an obvious one, let’s explore the root of why we may not want or don’t use this response more often and why we often are frustrated after we have the interaction. As CIC members, sometimes, we feel guilty merely stating “I’m OK” because in truth, we aren’t. Many times we are dealing with invisible symptoms, ones that can be very painful and/or ones that make us feel terrible inside such as headaches and nausea. Somehow, we feel that if we do not respond with the absolute truth that we are lying. On the other hand, sometimes we use this response but we really mean, “I feel like CRAP!” and when the other party doesn’t read our mind, we get frustrated, angry, and hurt. We think that the other just doesn’t care about us because he/she didn’t “get” that we merely stated the pat answer but expected a much different response. I know I have done this many times as I have tried to navigate chronic illness and communication. It’s tough. But, none of us are mind readers. If you want someone to know anything, you must tell them in concise words. That’s just how it works.
2. “I had a rough day yesterday, but I’m doing a little better today.”
With this response, perhaps it will feel a bit more authentic and truthful. We have days, hours, minutes, where we have relief, and we can enjoy ourselves. But those moments can change on a dime as we well know. One of the hardest things, I think, for others not in the CIC to understand is how quickly symptoms can change. It was a challenge for me when I first became ill to get the hang of this game! One minute I can be decent. I can hold a conversation with absolutely no problem. Yet, not 5-20 minutes later, I am suffering severe nausea, and I am experiencing word-loss. This occurrence is hard enough for those of us experiencing this to discern, let alone someone who had no idea how this works. Personally, I like this response or a modification of it because I’ve found that people can understand it and relate to it on some level. Another version of this might be “I had a great day yesterday, but today is tough.” Most people get this kind of a statement.
3. “I’m really not doing too well today, but thank you for asking.”
This may result in the other person not knowing how to reply, but in my limited experience, people get this one as well. While you are not explaining the sordid details of why you are not feeling well (you can save that for your BFF who REALLY gets it), you are telling the person, hey I’m not doing too hot. Also, you are acknowledging his or her effort and thoughtfulness to check in on you. Look, bottom line is that if every interaction with us becomes a negative or an uncomfortable one for the other party, it probably won’t happen much, if at all after awhile. This is just human nature. We move towards positive interactions and away from negative ones. Granted, sometimes this can trigger more questions, but maybe that is a good thing! It can open the door for us to have a candid conversation about our illness. This can also lead to more positive interactions, as well as more understanding and empathy.
Regardless of how we respond to the question above, in the end, it isn’t the other person’s responsibility to make us feel a certain way, nor his or her obligation to “guess” what we mean. I know, I know. Psycho babble. But it is to our advantage if we can make these interactions more positive and less stressful for ourselves. All in all, others are sincerely trying to be kind and caring. While this isn’t as easily done with us, it can work. These small and yet important connections with others can be spirit lifting. It can help of feel connected to something bigger than ourselves. It can help us feel less isolated and less misunderstood.
Do you have any tricks or tips to add to enhancing communication with others? If so, please leave a COMMENT! I would love to hear about other techniques.
On a final note, I am on summer break from teaching high school. I just had a colleague text me, “Just checking on you and your health. I hope hope you have been able to relax!” I am replying with, “Yes, indeed! Summer break is so wonderful. I can rest whenever I please. Thank you for thinking of me. How are you doing?”
This completely made my day. Wishing you a both a painless and joyful day. -Belle
Well, my people, it is Sunday afternoon. I’m really happy I survived this past week. I hope all of you did too. I am feeling much better today. Thank you all for your support. Today, I was pretty productive if I do say so myself! After a week of being too sick to do anything besides lay in bed, I was up and fairly active today. And no nausea! Which makes this day even better. Since I was way behind on grading, I told myself that if I could knock that out, I could come and write here. It was a great incentive!
I’ve been thinking a lot about this blog, and its focus. Yes, the focus is on Lyme disease and more specifically, my own personal experiences with treating and living with this disease. Over this past month, I have run into some people on social media and people in in my day to day life who also deal with a chronic illness and that, for the most part, has been a wonderful way to connect. However, it has also made me reflect on my decision to begin telling others about my illness. Coming out of the closet, so to speak, about having Chronic Lyme disease.
When I was first diagnosed with Lyme disease, I told my immediate family and my boss. In the beginning, while I knew I would have to treat for awhile since I had been sick off and on for about 3 years before the diagnosis, I had no idea that this might be a chronic illness for me. And, as I was so very sick back in 2013 when I found out finally what was going on, I thought it only prudent and honest to explain what was going on to my boss. The support was overwhelming. I also shared with a few colleagues who are dear to me. Otherwise, no one else knew, and I was happy to keep it that way. In my head, I felt that telling other people was a burden to them. It almost felt like by telling them, I was making excuses about why I couldn’t keep doing everything I had been doing. Being sick, to me, was a sign of weakness. Not that I thought that about other people. That only applied to me. Always the perfectionist, I am way harder on myself then on others (although I am sure my students would beg to differ!).
This strategy, the one of silence and limited sharing about my health, worked for a bit. Well, almost 2 years. And while I did make progress in treatment, I just could not continue with all of the responsibilities I had at work. I was in a leadership position and a club sponsor. These along with teaching 5 upper level junior/senior classes every day. I just had to make changes and move some things off of my plate so I could focus on improving my quality of life. This treatment thing was taking much more time than I had anticipated. Making the decision to no longer sponsor the club I had started back in 2008 and then also stepping down as a leader, these were tough, tough decisions. I struggled with feeling less than, incompetent, weak…oh, the list goes on. Reorganizing my priorities was a challenge. But I knew that I did not want to end up sacrificing my work by becoming more ill or vice versa. Something had to give.
Taking the bull by the horns, I relieved myself as club sponsor and my leadership position at the end of last school year. But in order to do this, more people were going to have to know the reasons why I was making this decision. Uncomfortable to say the very least, at least for me. I’m not big on sharing private things unless it is with close friends. In order to move on though, I did indeed share the basics about my health issues with my colleagues and my boss. I am chronically ill at this point, I have good times and then I have some really bad times, such as this past week, and I cannot make it to work. Communicating with others what was/is happening to me has become a huge relief.
Looking back, I honestly can say that I wish I had done so earlier on. Being more open and honest about my health has actually led to some great conversations with others. It has humbled me in ways I never knew. The kindness and understanding people have is truly amazing. Do I still have days where I feel like a burden? I sure do. But opening up has been a truly important step for my recovery, I believe. Thank you all for joining me on this journey!
This is my journey; intended solely to spread awareness of a debilitating, life threatening group of diseases spread by a tiny little tick, spider, flea, mosquito and other tick borne disease hosts. (PLEASE: always discuss your concerns with a Lyme Literate Doctor)
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