I realize that what i'm about to write is probably going to make me unpopular. But I've been thinking about it for a while, and I think it needs to be said.
As a little girl, I began to notice that when I heard the words "because you're blind", it usually meant one of two things. Either I was about to be excluded from doing something with my peers, or I was about to be told I had to work harder. I also learned that if I complained, it wouldn't change facts. Somewhere along the line, I got the impression it isn't okay to acknowledge my differences. Blindness isn't an excuse became a mantra. That doesn't mean I became super independent, or even extremely successful. It means I carry a lot of guilt. I've only recently started acknowledging that sometimes, doing something differently is no fun, and more importantly, it's okay to feel annoyed or angry at injustices I see. Acknowledging this does not make me weak or a disgrace.
As I've spent time thinking about how to help myself deal with the pain, I've noticed that blindness makes a difference in how I approach my pain, and it is important to acknowledge these differences and be honest about them with myself and doctors. Too many times, I found myself unwilling to admit that things are different for me, and accept help when I need it. As I've conversed with others about this new revelation, I started to realize I can't be the only one dealing with this. If there are as many people with vision problems as the powers that be claim there are, and if the statistic of one in five people being in pain holds true in the blind community, then this issue has to be more prevalent than we usually acknowledge it to be. So, I decided to do something about it. My short term goal, to be accomplished with this writing or more if necessary, is to get a conversation started. I'm just going to use my own narrative, since I have permission to do this, and make some conjectures and "what if" statements. I hope that this won't just be a sob story, but instead a conversation starter both between people who are blind and between patients and doctors, help others discover the ways medical conditions and blindness intersect and give hope to others. To do this, I'm going to tease out some common themes and perspectives and examine them from the aspect of blindness as a part of the whole person who comes to be treated for chronic pain. I'll use the biopsychosocialspiritual model of looking at the whole person to examine these ideas.
Biological and Physical
One of the first aspects usually discussed in regards to pain of any kind is the biological or physical cause. Scientists have discovered substances and neurotransmitters that cause and increase pain. They've shown that pain can cause depression, and, conversely, people who have depression feel more pain. Sleep problems often arise from chronic pain, and make the perception of pain worse. The obvious questions, does blindness increase the likelihood of either of these two issues? I can't answer the question about depression; I don't even know if there is a connection. But I do know that there are several studies right now related to blindness and sleep problems. It seems likely that between pain and blindness, sleep problems could be made worse, or even be more likely to occur, although I have no data to back up this claim. As for depression, while I have not seen literature on this, I do know that darkness can increase some depression's effects. Seasonal Affective Disorder may be a good example of this. I'm not saying that blindness causes depression, but asking if it has an effect on this aspect of pain.
The next important aspect of pain is its cause. Even if there is no cure for the cause of the pain, doctors want to know why the pain is caused to best treat it, and patients need a name for their pain and, possibly, something to research to become better informed and seek out needed resources and support. This may or may not be impacted by blindness. I know, in my case, blindness complicates the question of "what color is it?" I sometimes get the answer "I've seen it worse." And this is supposed to be comforting? Also, what color is that? I should explain that my condition, Reflex Sympathetic Dystrophy or Complex Regional Pain Syndrome can cause a lot of strange things such as changes in the color of the limb that's affected. If I go to the pain clinic, I can't tell them it's the color of "I've seen it worse", can I? And what about blind people who live on their own (which I plan to do)? How do they answer this question? I don't blame the doctors on this one. I know that a blue foot, or a purple hand is not good, and probably played an important role in my diagnosis with RsD. I'm not sure what the best solution is to this question. This is where I play assertive person and ask the question "well, what color is THAT supposed to mean?" It usually works. But this may be a barrier for me being able to gauge when I need to go to the doctor or not... but I'm getting ahead of myself. Another question to be asked in the case of finding the cause is whether some accommodation the blind patient makes could cause the pain. For example, if I constantly miss curbs, and twist my ankle; that could play an important role in knowing what to look for. In my case, I couldn't tell the doctors for sure how or why the pain started the first time. It wasn't like the second injury, where I felt my ankle give and had that sinking feeling of knowing I'd screwed up big time. I'm assuming this complicated my doctors' job somewhat.
Now, we need to examine the self-care needs of a patient who is blind. In my opinion, one of the biggest needs I have as someone with pain is the ability to use self-determination. I need to be able to get information I need and then, judging from experience or on the basis of that information, make the best decision I can at the time. This poses several dilemmas. First, the information aspect. For me to get information, I have to have some basic information. So if there is some information like the color of my foot that a doctor needs to give a diagnosis or suggestion for treatment, I need to get that information. If I'm looking for information on self-care, I need to know as much about my diagnosis, treatment and symptoms to watch for as possible. Finally, my doctor needs to be aware of barriers to my treatment.
To gain information, it is my responsibility to use sighted assistance as I would use a reader or screen reading program. I need to figure out what to look for, and ask the right questions. Sometimes, I have a guide that tells me what to look for, so I know what to ask. With a reader, I might have a worksheet, thesis statement or research question. I can then use that information to ask questions that the reader can help me answer. I can ask what the Bible dictionary says about temptation, for example. In medicine, if I know that color and hair and nail growth are important things to be aware of with CRPS, I can ask about those things. But, we don't always get a neat little guide or have enough knowledge to be able to ask critical questions. In this case, the best I can do is ask "does my foot look weird?" These questions do have benefits, of course. If I constantly focus only on color, I might miss other odd things because I'm limiting my research or question.
Another problem I face when gaining information is relative inaccessibility of health information available to me as a blind person. I can get basic information with some sites like Webmd, but even that information is limited. I still remember the first summer three and a half years ago when I researched information about "foot pain." It was so frustrating to see pages of great information, but realize that they weren't helpful because they asked where the pain was on a diagram of the body, or used a diagram to demonstrate the part of the foot with the specified symptoms. Now that I have the diagnosis of rsd, I realize how poorly a lot of pain-related sites are designed for people who use screen readers. Unlabeled graphics are common, and they make it hard to find the information I seek. And don't even get me started on the lack of accessible books on pain. I could scan them, but the constant up and down of scanning and the need to stand most of that time makes me hesitant. I don't want to dwell on the rsd; I refuse to give this awful disorder any more of a foot-hold (pun not intended), on my life, but I do want to have enough information to live a full and active life. And many books I've seen seem to be good for this, but they are not accessible to me.
The last issue with information I've seen is that very few handouts are accessible to me. Most of my doctors are great about giving me the information I need to make good decisions about life with the medications they prescribe, but I'm forgetful. Information on exercises, medications, treatments or coping strategies can be overwhelming. And I'm hesitant to involve yet another person in my care. Having a nurse give the information to both me and my family is a good idea in theory, but becomes problematic when you realize that I don't live with them during the school year. And questions arise at awkward times of day. Asking random dorm mates to read this information is something I'm not comfortable with. It gets so frustrating dealing with this pain, I don't want to make it larger than it already is. And, let's face it, not everyone likes reading medical information.
Then, of course, comes the difficulty in figuring out treatments and whether they work. First, there is the issue of barriers to treatment. If I were a heavy drinker, or drug user, my doctor would need to know that. If I'm dealing with pain-related depression, my doctor needs to know this, too. Also, blindness poses some interesting barriers itself. I'm not comfortable sharing my health information with other people in the lobby, however, and I wouldn't want to share some of that information with my parents if it were true.
I am fortunate to have great working relationships with all of the doctors I see now. My doctors do not rely on questionnaires to find out about drugs and depression. I know that the pain clinic uses them, but they are not the only or even dominant method of discussing these issues. My doctors are great about being trustworthy, and I can be completely honest with them. The questions get asked and answered honestly, and there has never been a time where I have felt like I was not trusted. This, in my opinion, is how things should be. I also know that I can admit that I am frustrated, though it is incredibly hard for me to do, no matter who I'm talking to. SO, for me, giving appropriate information is not a problem anymore.
Finally, I have pain issues that are specific to blindness. This is where that whole part about not wanting to admit things really comes into play. For example, when I had my surgery last May, my doctor encouraged me to stay over night in the hospital. Her reasoning was that I would not feel like learning to use crutches right after surgery. In the hospital, my pain could be managed if the RSD decided it was time to be a brat, and I could learn crutches in the morning. She said she thought crutches might be more challenging for a blind person. Honestly, I wanted to prove people wrong. But I was also scared of the pain issues. If something was going to happen, I was going to make sure it happened at the hospital. That turned out to be one of the smartest decisions, since the nausea was awful and I needed an IV, medication and lots of buckets. I'm sure someone is going to say that my blindness shouldn't have had anything to do with it. For me, though, it did. Because I stayed, we were able to find out that a walker was safer for me than crutches. That's not giving into blindness, that's being smart. In this case, the definition of independence was admitting I needed help and accepting it as gracefully as one can after surgery. I told that story to show that there are very good reasons to recognize these barriers, so we can effectively address them and hopefully improve quality of life, safety and comfort.
Let's look at some of these barriers. Most, but not all, of the barriers here are from my own experience. The first barrier I've had to acknowledge is that doctors just don't know what it's like to be blind. How can they help me address pain in a way that's safe for Julio and I if they don't understand our partnership and how we work? If the guide dog school says one thing and I hear the other from my doctors, how do I recognize both perspectives and integrate them? For example, I've heard the comment from people that I walk fast with Julio. People wonder how we can walk so fast if I'm in so much pain. What they don't know is that I'm supposedly a slow walker compared to other handlers. This posed an interesting question, is it safe or beneficial to have a guide dog? I resolved the question by examining how I traveled before I got Julio, and how I travel now. Walking with a guide dog increases my independence and safety. I find walking next to Julio means I have better balance and less stress. This is important because I am more efficient traveling, and able to accomplish more. My stamina is increased. But I still have to accommodate the increase in speed. This also means that doctors and therapists can't judge pain levels by walking speed as easily with me. There was also the added concern about having surgery once I had Julio. I put it off for about two years. I know it added stress for doctors trying to help me. Having rSD is bad enough, but dealing with that and my unwillingness to have surgery was probably very difficult. Now that we may have to consider more drastic options, we have the added concern of messing with any sensory perception. I'm hesitant to consider options like a spinal cord stimulator, since I fear the tingling would mess up my sense of feeling in my foot. I'm fortunate that my doctors are willing to consider these options differently because they treat each patient separately. In other words, they treat me like Nickie, not patient 343 with the bad foot. Some basic considerations for people who are blind and deal with chronic pain include working with a guide dog, staying oriented and managing medications to make this possible, balance issues, identifying medications, getting appropriate directions and other questions and issues too numerous for me to write them down here.
The next aspect of pain that must be addressed is the psychological aspect. Many chronic pain sites suggest that chronic pain can be aggravated by underlying psychological challenges such as depression. Similarly, depression is frequently caused by chronic pain. These issues can pose challenges for the person who is blind and has chronic pain that a sighted person might not face, or may face to a lesser extent. Daily life challenges increase stress, advice given about blindness cannot always be applied to dealing with pain and blindness community dynamics can increase stress and, for some people, may increase feelings of guilt and frustration. Each of these psychological challenges can be dealt with, but they must be discussed and acknowledged openly. The voices of people with pain must be heard in the blindness community to make changes and encourage a healthy psychological response to pain.
Stress can increase the perception of pain. Since stress is a fight or flight response, it makes sense that our bodies might respond to pain to a greater extent when we are experiencing stress. With rsd/crps, the heightened use of the sympathetic nervous system can increase the pain experience and cause a flare. A blind person can accomplish anything a sighted person can, but people who are blind must sometimes use more skills and experience more stress than the average sighted person. For example, travel requires more planning and more attention to detail for me. On a short bus and light rail trip, I need to engage in more planning and accept more help than my fellow passengers. Using the bus requires that I either call the bus company or use their on-line trip planner to get the information about which buses to take and when. If the route is unfamiliar to me, I am required to call and get as many details as possible about the route. It's not enough to know I need bus 80 on the corner of Smith and Granny; I must know where the bus stops. I need to know that it's the northwest corner of the intersection on Granny and the bus is going south. If possible, I need to know where on the block the bus will stop and if there are any landmarks. If I'm not at the stop exactly, I may be passed by the bus. Light rail requires a lot of trust in my dog, or cane skills. Since I can't read the signs to know where the train will stop and which one it will be, I must seek some form of sighted assistance. Crossing the street at a light rail station is challenging because I am not always sure which way to go to get to the appropriate crosswalk. In short, anything a sighted person takes for granted that they will have access to may be unavailable in its current form. This doesn't mean that I can't travel, only that travel is more stressful. Many tasks are like this; it isn't just travel. This doesn't have to limit me; I'm not proposing that we not engage in these tasks, just that we start acknowledging that tasks can be more stressful and start doing things to mitigate that effect on our pain. This may mean having a "survival" plan in place. I always carry enough cash or checking account balance to get a cab home. That way, if enjoying myself on the trip means I'm tired or in too much pain, I don't have to worry about how I'll get home. I used to believe this was cheating, but I now feel it's smart use of resources. It's a better option than never leaving the house. I also try to carry a small snack and a bottle of water with me, though I don't always remember. This way, if I'm overly hungry or thirsty, or need medication, I can travel more comfortably. A sighted person may just look for a restaurant, but I don't have the luxury of reading signs or a GPS unit yet. I can definitely ask people for help "Do you see any restaurants near here?" This works well when I'm feeling good, but when I'm tired, hungry and in pain, it's not the best method. I think there's a rule that says "when you need it, you can't find it." I can run into benches all day, but when I really need to sit down, I won't find one, for example.
Next there is the issue of good intentions and advice that works for blindness but not for pain. First, blindness is difficult to accept if you've been sighted all of your life, but people understand the challenge to accept it. Sighted people are understanding when a blind person asks for help. I've gotten the feeling that it's okay to not like being blind, but not okay to struggle with accepting pain. Blind people, on the other hand, want to encourage independence and acceptance. A "well-adjusted" blind person shouldn't need help, after all. None of my friends have this attitude, but I have definitely been told this before. The advice not to ask for help and do everything anyone else can do is good, but not to the extent of hurting your health. This came into play when I went through orientation and mobility training. My instructor was smart and helped me learn to pace travel, but I always questioned whether I was "a bad blind person" for being unable to travel perfectly.
Finally, the dynamics of the blind community can cause some major psychological challenges. Sometimes, it seems we get into a contest to see who is "the best blind person." I've been ripped to shreds before because people felt my skills weren't good enough. So now, when I do things differently because of the pain, that's one of the first fears I have. It's so easy to jump to conclusions and distance ourselves from people who we feel aren't well-adjusted enough or skilled enough. But when we're in the other seat, it's incredibly painful. I've been told not to mess up because people would think "all blind people are like that". This attitude causes fear, which increases that fight or flight response. This may not be a problem for every blind person, but I extended these feelings of guilt and inadequacy to dealing with my pain. "If I were only a better person," I say "I wouldn't need to do x y and z to deal with my pain." I wouldn't say that to my social work clients when I have them, so why do I say it to myself?
Fortunately, there are solutions to deal with all of the challenges I discussed. First, we need to admit that there is a problem. Admitting that blindness complicates chronic pain is the first step. Then educating others about these challenges will hopefully help give others with pain the chance to express their voice. I believe both consumer organizations and individuals can have a positive role in helping with all aspects of pain management, but only if we start talking about it.
Next, I think relaxation can be built into each person's day, and thus canmitigate some of the stress issues with pain. Relaxation exercises can be different for everyone because what is relaxing to one person can be stress-provoking for another. Studying relaxation information thoroughly can help a person create a program that works for them. If this is too difficult, meeting with someone trained in relaxation might help. I've found that using relaxation techniques helps make my medication work better, and also helps me deal with the nausea that accompanies high pain levels. Learning relaxation techniques to enhance travel and daily life might make travel less stressful. Redefining independence as doing the best that you can with the resources you have will also help.
The next aspect of pain is its social implications. The largest implication, for me, is that unless someone sees my foot turn purple or notices the brace or cane, they won't know I'm in pain. How do I explain that I can't hang out because I've got this disease no one's ever heard of? It's very strange going from people recognizing blindness immediately, to no one knowing what on earth I'm dealing with. I'm so used to trying to prove that I'm "just like everyone else," that I feel awkward saying "I really shouldn't do that."
The next issue with the social aspect of pain is logistics. I'm challenged enough by transportation issues as a blind person, but when I'm also dealing with pain, it's even more challenging. Taking the bus is great, but severely limits me to how far away I can go. If I want to enjoy myself on my social outing, I can't expect to walk seven blocks each way and enjoy the concert. Taking a cab is another option, but it costs money, which college students need to monitor closely. If I know about these two challenges, I'm more likely to just stay home. This could severely limit my social life.
Finally, the spiritual aspect of pain is, in my opinion, poorly understood. When you add in any other aspect, it could be enough to make your head spin. I'm not a theologian, and am uncomfortable trying to write about spirituality on a macro level, so I'll continue to work with my own narrative here. At church, I found that people couldn't always understand why blindness isn't a big deal to me, but pain is. They felt that blindness must be so much worse than pain. I've never felt this way, though, and it makes it harder to discuss the pain and my spiritual struggles with it. I even find myself wondering if I'm a bad Christian for struggling with the issues of "why me?" and the feelings of fear and guilt. People automatically assume that I have the coping skills, when really, sometimes I'm just saying things are fine when I feel like I'm about to fall apart. I can see some people feeling that blindness and pain are too much, or feeling guilty for feeling that way. I often find my thinking "I can deal with blindness, and believe it's a gift from God, but what am I supposed to do with pain?" I believe honest discussions about disability in the church will help clarify this issue. For now, being honest about struggles and seeking knowledge and wisdom is a great place to start.
I set out to write something other than a sob story or train wreck piece, and I will keep my promise. I believe there are ways to deal with the issues I've presented here. The first step, as I've already mentioned, is to be honest about how these two pieces of our lives (pain and blindness) intersect and affect us. We must break the fear and bring these issues out for discussion. It is my belief that the consumer organizations and those not involved in them can both play an integral role in helping people who have pain and people who are blind. We've found ways to advocate for change and offer support in areas as diverse as Braille, education, job-seeking and Guide Dogs. I believe we can take the good energy from those experiences and use it to transform the experience of pain for others who are blind. I'm not sure how this will happen, only that it can.
I've spoken in this article and others about how my experiences dealing with life with blindness and chronic pain. It is my hope that others will use their voice to share their experiences so we can address them further. Maybe there are more common barriers that I haven't shared here. This isn't meant to be the end-all authority, just a starting point. Please use the comments here or the email form to share any thoughts that come to mind. I'd love to start a dialogue about this.