Sick (12 page)

Another thing that people experiencing sickness often find less than helpful is the ‘non-specific offer' of help: “Let me know if there's anything I can do.” This is certainly a warm sentiment, but it in some ways passes the buck: you've made the offer and now it's the onus of the person who is sick to come back to you. This can assume that the person dealing with sickness is going to ask for help. It is often very difficult to do this. Someone's lack of asking may not necessarily mean that there is a lack of need. Your friend may find it more helpful if you spend a little bit of time thinking about what the person might really need and then specifically ask about that task. For example: would it be helpful if I accompanied you to the doctor? Would you like me to help you research treatment options? I'd like to do your
laundry, would that be something you would want? If you are worried about your medical bills, would you like me to brainstorm ideas for alleviating the financial burden? Do you need help taking care of your pets? Can I take you out to lunch or make/bring you a meal for dinner? If your friend does not need something this week, it does not mean that he won't need something next week. Check in again (and then again).

It can also be important to allow your friend to voice frustration or anger and to avoid trying to put a positive spin on something. Anger and frustration are perfectly valid responses, at least some of the time, to dealing with a serious diagnosis that is unfair, unwanted, undeserved, and utterly life-changing. No person who is sick should be made to feel that they have to be positive all the time. If someone is able to maintain a positive attitude and outlook most of the time, they still have a right to feel negative at other times. Instead of invalidating your friend's feelings or telling your friend how to feel, try to actively understand and acknowledge their feelings.

While I think the fear of “saying the wrong thing” is overstated, there are a number of phrases that can often be less than helpful. One is “everything is going to be just fine.” While it can be important to be positive and assuring to your friend, these types of statements can come off as downplaying a serious situation that your friend is going through. Similarly, saying “it could be worse” is making a judgment that only the person with illness has the right to determine for themselves. Also, “you should…” or “you've got to…” are typically not statements that are going to help your friend, at least if phrased in that manner. Finally, when a friend of mine with a very serious diagnosis was told “you've gotten this because you can handle it,” it was the closest she came in her life to spitting in someone's face!

An illness also often means that the context and way you enjoy your friend's company may need to shift. What your friend can do physically at times (or possibly all the time) may be limited. One important way to support someone is by continuing to include them in social plans and to work around their restrictions. For example, if your friend has just had surgery and can't leave her apartment, offer to bring over a few movies and hang out. If the illness or being on particular medication means that he can't drink, suggest plans that do not involve bars and/or partying. If your friend is struggling with a digestive disorder and having a flare up during which eating out is hard, offer to make dinner following the guidelines for what she can eat. For someone with illness, it's very easy to begin to feel like a burden to your friends when you're sick. Reorienting social plans around your friend's needs so that they continue to be able to hang out can be tremendously important.

However, it is also important to be mindful of how someone who is sick may not feel like hanging out or even calling back. When I was in chemotherapy, I was too
exhausted to see people and felt too miserable to continually have phone conversations in which I told people how terrible I felt. These conversations generally didn't make me feel any better, so after the first round of treatment, I decided that I needed to have brief periods of being out of contact during each subsequent round of chemotherapy. Some of the best messages I received during these times were ones in which friends just called or sent a nice handwritten note to say that they were thinking about me. I knew that they were not expecting a call back if I was not up for talking but that they would talk all night if I was. Calls that were much less helpful were ones in which people guilted me in to calling back so that they could be assured everything was okay or ones in which people asked for the latest update for what was going on as if they had simply wanted to do their job of ‘checking in.'

For friends who are dealing with chronic problems (or recurrences), it's also important not to assume that things will always get easier over time. While the time after diagnosis is often the hardest, people who continually have to deal with their illness may find it difficult to keep up their stamina and optimism. It is not uncommon to hear people dealing with illness speak of the support they received being greatest after their diagnosis but then dwindling as time passed, even though they still needed understanding if not outright care from those around them. Multiple stages of disease, new attempts to try different forms of medicines/procedures, and/or successes and setbacks in treatment may bring additional life changes to your friend and may mean continual shifts in how you can best support your friend. Life may never return to status quo. Even if your friend isn't dealing with a chronic problem, be aware of how changes to circumstances or things like check-up appointments or anniversaries of diagnosis can stir up a lot of emotion and make these particular times more difficult.

Two final bits of advice: do not underestimate the importance of reminding someone how much you love and care for them and how you are there to support them. Also, remember the importance of touch: holding someone's hand or giving them a hug (if that's appropriate and welcome) seems insignificant, but can make a huge difference.

I hope that this article helps to further a dialogue about support and illness, particularly within radical/DIY/punk scenes. There is so much more that can be said about what I've written here; this article could easily be expanded into an entire book. I hope that others will add to this topic and also address the many related issues in future articles. As I noted, most likely nothing I've written can be applied to everyone at all times and support will need to be applied in different ways based on the person (this is one of the many reasons why communication and listening to your friend are so critical!) Getting better at providing support is a process and one that with effort each of us can improve on to better help our friends and move us towards reconstructing our communities around provisions of care.

Since being diagnosed with a Mulitple Sclerosis (MS) (a chronic autoimmune disease that affects the central nervous system) two years ago, I have gone through and continue to go through a series of findings: finding out about my body, my illness, my strengths and limitations and my shifts in perspective. But because nothing is ever only about me or you – and it is always about us and we – the last two years have also been a time of discovery when it comes to seeking support and being a supportee. In my previous life, I didn't have much experience in seeking and managing support as I'm an independent person who enjoys keeping certain aspects of my life to myself. But one of the first things I did was tell my parents, partner and close friends. It was intrinsic…and necessary for more than emotional reasons.

We all need and desire support. But even if it is a natural thing, it can feel difficult to find and awkward to maneuver. There are plenty of tips and guidelines for the supporters, but this piece is for the supportees (these roles are fluid and ever shifting, so it may help to be familiar with both!). The following are guidelines I have gathered from my individual experience. I certainly did not always understand all of them and still can have a hard time following them (though it isn't always necessary to). It probably is necessary to assess each situation and decide what action to take. I hope the following can add to the knowledge you already have.

When you are ready, go to those people who you trust and who you think can be supportive. Friends, family, partners in love, crime, activism, etc. are the first place I thought to go. Start by telling them what you know and/or what you want them to know. You can tailor each explanation to each individual.

You may have to go beyond your initial comfort level. After my diagnosis, I struggled (and still do) with knowing who to tell and who to seek/expect support from. Aside from the first string, I also decided to tell those who I was working on projects with just so they knew the underlying reason for my change of energy and availability. Here, I also found support and understanding.

Ask for what you need. We rarely get exactly what we want, but sometimes we don't get anything even close! If you need more (or less), think of ways to ask for it. Your supporters are probably not mind readers and don't be so sure your hinting is obvious. Instead of keeping things bottled up inside, deal with the issue
before it becomes larger than it has to be. Of course be reasonable with what you are asking for and from whom. But don't be shy. Have open and honest conversations about what you can do for each other to make sure you both are getting your supporter/supportee needs met. This could take the form of check-in sessions every once in a while.

Don't be afraid to say what you don't need or don't want! If you don't want to talk about your illness at the moment someone inquires, you could say something like: “it's sweet of you to ask but that topic is too draining for me right now.” There will most likely be times when someone will give you unsolicited medical advice and if that annoys you, say so: “thank you for thinking of me, but I cannot take in any more information as I am consistently overwhelmed by all the choices/medicines/herbs I already have to consider.”

Don't assume that you can trust someone to keep the information you share with them confidential. People tend to share information that has affected them emotionally. This is not always in a gossipy way as it could be that they are trying to help (like wanting others to know so they can support you too). Regardless of motives, it can be very frustrating. So just be clear about what information (if any) you feel comfortable with them sharing. Alternatively, it may be helpful to have people you trust explain your situation in your terms to others if you are too tired, scared, or whatever to tell them yourself. Make sure to ask if they are comfortable doing so.

Be patient. Just as we are asking for this from others, we must also give it. There are going to be people who are accustomed to giving support, but there are also going to be others who need more time or guidance. Remember, this can be a bumpy, emotional process. Just as you are getting used to a new part of your identity, so are those in your life. When in the thick of your troubles, it may seem those close to you should be feeling as emotionally connected to what's going on as you are. But in reality that is not going to be the case most of the time. This does not mean they don't think about you or want to help. Remember to ask about it if you need/want to.

Also remember that every new person who comes into your life and receives the knowledge of your illness/needs is a new place to start. While you are now familiar with your needs and the support others in your life provide, this new person is most likely not and you may need to start the process from the beginning.

Be understanding of mistakes. Beyond not being able to know what support is needed, sometimes people will do things that can come off as harsh or negligent. This could be because of the stress of your illness or other things in their life, but please don't be so quick to judge. Recognize the difficulties your supporters are encountering. Give chances and accept mistakes.

Deal constructively with their worries. My family was so worried about me early on. I understood that it was only because they cared about me, but they had to understand how it was an extra burden for me to worry about them worrying about me! So we talked it through. And while they still worry, now it's kept in check because we understand the causes and triggers for the other person. You may find that you may not even remember your self-determination when making serious, stressful decisions. But ultimately, it is your choice what you do with your body, life, mind, etc. Just be respectful and explain yourself the best you can and hope they understand.