Recently, Robyn over at "How are You?" and Other Dumb Questions contacted me in regards to an article she was writing for her college journalism class. The article was to focus on the trend and impact of chronic illness, and would include interviews and discussions with various bloggers describing their experiences living with ME/CFS.
I thought she asked some great questions, which helped to provide not only a glimpse into my world, but also into the world of both the chronically ill and those who are on the severe end of the ME/CFS spectrum. I requested Robyn's permission to post our interview on my blog, and she kindly agreed. You can find it in its entirety below.
Many thanks to her for inviting me to participate. I was honored to be part of the project! Please be sure to check out her blog, which is linked above.
I should add that this may be my last post again for a couple of months. I have what (for me) could potentially be a lot of upcoming activity, and given my current state, I will need to cut my online time down even more than usual in order to save as much energy as possible. I hope to be back sometime soon, though. In the meantime, happy spring!
Thank you so much for getting back to me! I’m delighted that you’ve agreed to my interview. I absolutely understand your limitations, and I am happy to conduct the interview via email.
First, a few basics:
1) Where do you live? With whom do you live?
I live in Arizona in my parents' home. I moved to AZ from Boston sometime after getting mono, but before being diagnosed with CFS.
2) Are you married? I read about your fiancé on your blog—congratulations! What are your plans for the wedding, or are they on hold because of the illnesses both you and your fiancé experience?
Thank you! Unfortunately, we have not yet married. Our wedding is on hold until our health improves. We live in different states about 2,000 miles apart, and we are both currently too sick to travel or pick up and move. Jim was able to fly out here to surprise me and propose, but it was an enormous effort on his part and takes a big toll on his health. So, as much as we'd love to get married now, it will have to wait until one or both of us is feeling much better. Then we'll both be dancing down the aisle. Or wheeling down it. Whatever the case may be. :)
3) Speaking of your fiancé, I understand that he too suffers from debilitating CFS and is wheelchair-bound. Can you tell me a little bit about your relationship and how your understanding of illness brings you closer?
It is wonderful to have a companion who can fully understand this illness and all its complexities, frustrations and difficulties. CFS is a disease so often misunderstood by the non-sufferer, and it's a real comfort to have a companion who can so completely relate. At the same time, it can also be very difficult because of all the restrictions CFS creates for us, and because we both know just how much the other is going through.
But to be honest, Jim and I actually don't spend that much time talking about CFS. We do discuss it of course, but we both have so many similar passions and interests in life that there are always countless other things we want to talk about. That's what I find most fulfilling about our relationship... our connection beyond and despite CFS.
Also, Jim is incredibly smart and very funny. We have great discussions, and he often reminds me to laugh and keep smiling despite it all. I think that's really important. I don't think I could have gotten through this without that reminder. Or without him.
Thank you! Next, I’d really like to know more about your relationship with illness. I know the story of how you first got sick—a serious case of mono complicated itself into a severe case of CFS—but I’d like to know more about its effect on your daily life and your relationship with current doctors.
1) First, the name “chronic fatigue syndrome”—do you feel it describes accurately what you have? Why or why not?
Definitely not, and for many reasons. First, it only focuses on one symptom, and on a symptom that is common in many illnesses (as well as in every day life). Second, many sufferers would not even consider fatigue as their main or most debilitating issue. For me, if I were to list my symptoms in order of their severity, they would be 1) post exertional malaise (worsening of symptoms after the most minor of exertion), 2) orthostatic intolerance, and 3) neurological problems/ sensory overload. Next would be incapacitating exhaustion, which leads to the other reason the name is so inappropriate. The word fatigue is a grossly inadequate term for what we experience. The exhaustion level is completely outside the normal, healthy conception of fatigue, and I think that is part of the reason it is so hard for people to fully grasp. It's much more about feeling horribly sick than it is about feeling tired. So, the name of this illness is really unfortunate and is part of what creates so much stigma and misunderstanding.
2) It took 2 years for you to be diagnosed with CFS. How many doctors did you go through before someone realized what you had? What were the frustrations of your diagnostic process?
I'd say I probably saw about a dozen or more doctors before I was officially diagnosed. I saw several internists, several infectious disease doctors, a neurologist, an endocrinologist, a rheumatologist, etc. They had to rule out all kinds of other diseases first, so it took a long time. Much longer than it should have, in part because of the lack of knowledge about CFS even within the medical community. I have had doctors tell me they didn't believe in CFS, that I was probably just depressed and should "snap out of it," and even that I needed to stop causing so much distress to my family. It's really terrible some of the things doctors have said to me over the years. Not that there haven't been some competent and compassionate MD's along the way as well, of course, but they were the rarity rather than the norm. There are very few doctors educated on CFS out there, and that's a real problem.
3) I’ve seen your Youtube video, as I mentioned before, but I’d like to know more. Please tell me how being chronically ill affects your everyday life. How many hours a day do you need to sleep? How much time are you actually able to spend doing things you enjoy? Who takes care of you? What is your relationship with your caretaker like?
Prior to getting mono and developing CFS, I slept like a rock each night, and needed very little sleep to feel energized, healthy and functional. The sleep disturbances so common with this illness seemed to occur overnight for me the very day I fell suddenly sick. So, I don't often sleep very well and don't feel refreshed even when I do. I tend to get between 5-9 hours of sleep each night, depending. If I get less than 8, I am completely non-functional.
As for day-to-day activities, I'm very limited, especially following my recent setback. I tend to spend about an hour online writing and checking email and my various social outlets, and then I'm pretty much wiped out. So, the remainder of my day is usually spent listening to an audiobook or to music or NPR/talk radio. Sadly, that's about it. It's all terribly exciting. ;) Clearly it's not the adventurous, active life I'd always imagined for myself, but I do the best I can with it and try to take things day by day. I still have faith that a full, healthy life awaits me and remains attainable.
Regarding assistance, I live in my parents' house and they both help me out as needed. Due to severe orthostatic intolerance, I can only sit up for about 5 minutes, but thankfully I can make it to the rest room on my own in my wheelchair (about 3 yards away), and can still sponge bathe in bed on my own as well. So really I mostly need help with food/meals, cleaning, laundry, errands, phone calls, etc. My mom does all of that for me and I'm extremely grateful to her for it.
If my parents are not available, our wonderful next door neighbor comes by to help me out as necessary. We are very lucky to have her. We used to use a disability service, and they were terrible... incredibly unreliable. So this works out much better, and I feel really fortunate about that.
This illness is often quite hard on the caretaker as well as the patient, particularly if that person is a family member. The dynamics change, and there are so many frustrations on both ends. It's very hard to watch a loved one suffer, and feel there's not much you can really do to help. So, I try to make this as easy on my family as possible and to ask for as little help as possible as well.
4) Can you lead me through an average day being Laurel?
Oh boy. :) As mentioned above, my day-to-day life is not very exciting. The highlight of my day really is checking my email and writing to/hearing from my fiance. I am usually wiped out after about an hour of online activity, and the remainder of my day is spent listening to the radio or an audiobook. Due to neurological problems, I can't read books or really watch TV, so audiobooks have become a huge part of my life. Some days I'm too sick even for that, and can do nothing but lay in bed in silence, or listening to music.
On "decent" days, I can sometimes be wheeled to my parents' bedroom to lay in their bed for a change of scenery. Their room has a larger window with a better view of the mountains, which can make for a nice temporary escape. I call it my jail break. :)
5) What kind of stigma have you experienced having a chronic illness, especially such a severe one? How has your relationship with others changed since you have been sick?
The stigma attached to this illness is tremendous. Again, I think that has a lot to do with the name. It suggests we are all just tired or lazy, and that we should be able to deal with it and get on with our lives. I still remember the first time I told someone I had CFS and they actually laughed at me. Laughter is not a response you expect when telling someone you have a serious, debilitating, multi-systemic disease. But I've actually had that response more than once, particularly when I was still working and seemed healthy. When I first became homebound, someone actually said to me "I wish I could take time off work and just lay around the house all day too." You would never hear someone say that to a person who had just become disabled with MS, HIV/AIDS or cancer, diseases the CDC has equated CFS to in terms of illness severity and disability. So, there's a real lack of understanding.
I also think there is a stigma attached to the idea of a chronic illness in general, and to the severity of that illness. That is, if you are bedbound with chronic disease and with little improvements over time, some people can see that as a failure of some sort. They think you should be able to overcome it somehow, even if there are no viable treatments available. I actually had someone (who clearly didn't know me very well) tell me that if I am still this sick after all these years, then I must just not want to get better. It was as though the person thought I would actually choose this for myself, or as though I haven't done everything in my power to try to get well. It can feel very demoralizing.
Regarding relationships, I don't think there is a single relationship this illness hasn't affected. With my case being so severe, I am unable to talk on the phone, unable to spend much time online, and can only tolerate a few minutes of interaction. That obviously creates a huge barrier on maintaining strong relationships with the people in my life. We do the best we all can to work around it, but obviously it makes things much harder. The dynamics of the relationship also change. There's no longer an equal exchange of give and take. Obviously I'm not able to give of myself in a relationship as much as I would like, and that is hard as well.
Illness in general is also a difficult thing for a lot of people to deal with. While I am fortunate that most of my friends have stayed in touch with me, there are also a couple who have quietly disappeared. People go on with their lives. I also think some just don't know what to say after awhile, especially since I can't always respond. I certainly don't blame them for that, of course. But I do miss them.
6) Would you characterize your illness as an “invisible illness?”
The fact that most of us don't look sick does, I think, contribute to the stigma and misunderstanding of this illness. It's hard for people to truly understand just how sick we are when we look perfectly healthy. Even for those of us bedbound or wheelchair bound, it's still hard for most people to really grasp. This is made worse by the ridiculous name, as discussed above. Because really, who hasn't been chronically tired? I think until the name changes, we will continue to experience misunderstanding. I'm hoping with the latest research that things will start to turn around soon. I'm especially hopeful that new and better treatments may be around the corner.
7) You’ve mentioned that you are not depressed, which I’m glad to hear. (I unfortunately can’t say the same, but I am under adequate treatment for that part of my illness story). Even so, your blog is called “Dreams at Stake.” How does putting your dreams on hold make you feel? Are you frustrated, upset, or do you simply accept your condition?
I am fortunate that depression has not been an issue for me despite my situation. Though, if it were, it would certainly be understandable. It's easy to see why someone with CFS may also suffer from depression, but important to note that the depression is most often secondary to the illness. That is, as with any debilitating disease that involves so much loss and physical pain, there is likely to be some grief and sadness to come along with that. Secondary depression can occur with any kind of serious, life-altering illness.
While depression thus far has not been an issue for me, it is not to say I don't have my down moments, or that I am not disappointed and intensely frustrated by my situation. This is especially true when I'm having a major setback like I am now, and am even more limited and sicker than usual. It is beyond discouraging. But I try as best I can to stay focused on what I have, rather than what I've lost. I think it would be impossible to get through this on a daily basis otherwise. I am fortunate to have my fiance to help with that, as I am not sure I'd have been as successful in getting through this without him.
I think it's important to differentiate between depression and frustration. With depression, a person tends to give up all hope. With frustration, the very word implies that the hope and determination and desire are all still there. So yes, I am incredibly frustrated. I am frustrated at all the lost dreams, at all the lost relationships and experiences and goals. I am frustrated with the lack of research and understanding, the misconceptions, and the stigma. And I'm frustrated by CFS itself... its severity, its limitations, its unrelenting nature, etc. It's all unbelievably frustrating. But despite it all, there's still meaning and hope in my life, and that's what I try to focus on as best I can.
As for my blog title, I have to confess I didn't come up with that entirely on my own. I had submitted my story to The CFIDS Association of America, and they asked if they could publish it. They came up with that title, and I liked it. It summed up the main reason I had written my story -- to plead for more action and to emphasize that people with CFS are people with dreams and ambitions who didn't want to be sick, and who want to get well and live out their lives just like everyone else. I wanted to show that, even though this illness has taken away the fulfillment of many of our dreams, it has not taken away the dreams themselves.
Anyway, that was a really long answer!
8) What do you enjoy most in your life?
I've learned to appreciate the little things, which when you think about it, are really the big things anyway: my fiance, my family, my friends, good food, a bed to sleep in, shelter, the views from my window, a good book, a rare day of not being in total physical distress from morning until night, being able to write when I can, etc. If this illness has taught me anything, it's to appreciate the little things, because you never know when they might be taken from you. When I first became housebound, I thought I'd lost everything. But I could still walk, talk, shower, watch TV... I didn't realize how good I had it. :) I wish I'd been more grateful for the little things then, and so I try to be mindful of that now and enjoy what small things I can still enjoy.
Finally, I’d like to hear your thoughts on blogging and online community.
1) You started your blog last May. What made you decide to start a blog?
I started to blog for two main reasons: to raise awareness, and to have a voice. I used to get so frustrated that those of us most severely afflicted with this illness do not often get to tell our story because we are simply too sick to do so, and our stories therefore are not often heard. It occurred to me one day that I could try to be that voice, even if in just some small way. I wanted my story out there, as well as Jim's, in the hopes that it could increase awareness and would perhaps be helpful to others going through the same thing.
Blogging has become more difficult for me with this last crash, but I hope to continue with it whenever I am able.
2) How has blogging increased your feelings of community (if at all)? Have you found many others who empathize and understand your daily struggles?
The blogging community is great! When I first started to blog, I had not been anticipating that it would be so interactive, and it was a nice surprise. I am not able to be as interactive as I'd like to be (it's so hard for me to keep up with it all), but it is good to know there's such a large community out there, and that we are all supportive of each other. We are not alone, and blogging is a great reminder of that.
3) Have you joined any other chronic illness communities? If so, which ones and how have they helped/ affected you?
I do belong to some other social outlets, (e.g., CFS and Lyme message boards, Facebook, a book club, etc), though I haven't been able to be as active on any of them since crashing. But it is a great way to communicate and meet others going through the same thing, or to stay in touch with old friends, meet new people, etc. It helps with the isolation that is so common with this illness.
4) Why do you blog?
Again, primarily to raise awareness, and to get my story out there. It's a tremendous thing to feel like you are finally being heard.
5) How do you balance your desire to be online with your personal struggles with sensory overload? How do you budget your time?
Oh that's a tough one!! I am not good with pacing AT ALL. I've always been an over achiever; someone who always needs to be doing something, always accomplishing something, always active and engaged. I am not one who has ever been good at waiting, or resting, or laying around. That's really been the toughest thing for me, and is a constant struggle. I don't think I'd have gotten as sick as I have if I'd been better able to manage that struggle, instead of always being so determined to try to push past it. Even now when bedridden (in fact, perhaps even more so), I don't think a day goes by that I don't push my envelope in some capacity, hoping (despite about a million lessons to the contrary) that today will be the day I get away with it. The push/crash phenomena of CFS is such a brutal and difficult lesson to learn. But I do my best with it. I try to give myself a set time of how long I spend online each day. I don't always follow that time-line very well, but I do try.
CFS truly requires an enormous amount of patience.
Thank you again for talking with me, Laurel.
It was my pleasure, Robyn. Thank you!