Friends and Family and Arthritis – Part 1 – Friends

For me, there have been two factors that impact how my friends react to my arthritis (and therefore how I talk to them about it).  The first is whether I met them before or after I got arthritis.  The second is how often I see them.

Post-arthritis friends and friends I see frequently

The friends I have made as more of an adult (when I already had arthritis), see arthritis as part of the package that is me.  In this group are my closest friends, who I confide in and talk about being frustrated, being in pain, etc, and also my friends who I see a lot but am not as close to.  With my really close friends, I share my frustrations with them, but I am still careful not to have it dominate our friendship or interactions.  Really you should be complaining an equal amount as your confidants do, and don’t use up all that time just for arthritis.  For both really close friends and pretty close friends, it actually strengthens the relationship if they feel like you trust them enough to share about your arthritis.  They will also feel good about knowing they are tuned into your needs and that they won’t accidently upset you by asking you to join them on a hike or something (not that this would bother me, but they might feel bad). 

When it comes to hanging out with these friends, I am totally upfront about what I can and can’t do.  They don’t need an explanation of why (what joint is bothering me, etc.), but I will tell them that given my current health, I can’t go bowling right now, but I can _____.  Don’t leave them guessing about what will work for you.  Also, help them to understand that you are okay with missing some gatherings, or even coming a lot to watch.  My friends know that I think people are more important that food or activities, so they should invite me to anything whether I can participate or not.  This way I don’t have to keep our social group from doing something fun just because they feel guilty about me. 

Pre-arthritis friends and friends I see irregularly

My college friends who knew me when I was “normal” have more trouble adjusting to my arthritis.  I think it makes them feel uncomfortable and guilty when they hear about how “hard” my life has been, although of course, I don’t think it is “hard.”  I tend to limit sharing about my arthritis with them.  Even my best friends from college, who I keep in touch with, still respond slightly differently than the friends I have made after.  I remind myself that they care just as much, but they are not sure how to react since I have changed from the person they knew.  Over time, it has gotten better, but I have to remember to be patient and understanding of how it is hard for them. 

I also share very little about my arthritis with friends I see irregularly.  If you see them for one dinner once a year and you end up even spending 5 minutes talking about your arthritis, they may get the impression that you are obsessed with it (this happened to me).  I know they care about what is going on with me, but it is hard for someone to understand anything about your condition if they only see you once a year.  I tend to limit my communication to this:  I let them choose whether to ask me about it, and if they do, I tell them that it is a process, but that I am heading in the right direction.  That kind of answer tends to not produce any follow up questions and allows them to feel good about knowing I am getting better. 

When it comes to hanging out with people from this group, I take a different approach than I would for the post-arthritis friends.  Referencing back to the Managing Uncertainty post, I am more likely to plan an escape route than I am to talk about modifying plans ahead of time.  If I am hanging out with them one on one, then usually I can influence the plans to be something I can do without even mentioning arthritis.  I can say “I would be up for a movie, shopping, or mini golf.”  I don’t have to say that I don’t want to go dancing or hiking because my body can’t handle it. 

If it is a large group event with this group of people, then I will usually let the group decide what to do.  If they are deciding to do something I can’t do (like going for a hike), I will ask if they are doing a meal before or after where I could join them.  If it is something where I might be able to do part of the activity, then I will have my escape route planned and leave when I need to (I might even make up an excuse like cleaning/etc. if I don’t feel like even discussing arthritis). 

Friends, Family and Arthritis – Communicating About Your Condition and Your Needs

I was 19 when I started having arthritis, so I have played a lot of roles from kid, to friend, to college roommate, to girlfriend, coworker, and now wife.  All of these roles present new challenges both for communicating about what is going on and for making sure the relationship doesn’t fizzle out during times where you are less mobile.

For me, I have developed different strategies for all of the groups of people I interact with (or have interacted with in the case of dating).  Since this would be a really long blog post if I put it all together, I am going to separate out my thoughts by group:  Friends, Parents, Boyfriend/Girlfriend, Spouse/Partner, Coworkers/boss, and Strangers. 

There are two big pieces of communicating about arthritis with those around you.  The first is talking to them about your arthritis.  All my friends, family, close coworkers, and important management know I have arthritis.  I am fairly open about my condition, but I am also careful with over-sharing.  Each person and each relationship makes sharing more or less helpful or appropriate.  In the future posts, I will talk about what I have found works best for each group.

 The second is finding ways to interact with them within the constraints of your arthritis (and communicating this to them).  I have talked a little bit about some techniques in my Managing Uncertainty post, but I think there is an art to asking for what you need from each group of people.  Your relationship to them (spouse, employee, etc.) makes this interaction very different, so I have adapted my approach for each.  These techniques are also important when it comes to fighting isolation.  If you are unwilling to talk about your needs to your friends/family/etc, then chances are you will end up isolating yourself from their world (and your own social life). 

When dealing with all groups, I have the following two main rules:

1) Put yourself in their shoes.  They don’t know about arthritis and aren’t sure how to act, so if they say something insensitive or don’t say anything at all, give them a break.  Imagine if you saw someone who was blind.  You wouldn’t know whether to ask about it, offer to help, or ignore it.  Your arthritis is going to bring up the same confusion for them.

2) You don’t owe anyone an explanation of your arthritis.  You can tell them that you would rather not focus on it given your limited time together or if they don’t know about it, make up other excuses for what you need.  If people see that I have wrist braces on, I sometimes just tell them that I hurt my wrists and they are almost all better rather than sharing my personal issues.  Honestly, medical conditions, whether large are small, are very personal issues and it is your choice about whether you share.  The fact that arthritis is so personal is also why it is good to share with people you are close to.  Sharing about your arthritis can help you stay connected to the world around you and feel like you have the support you need.  Lastly, the strangers who will be mostly interested in prying about your arthritis are people who have family members with arthritis.  I tend to let my guard down and be more open (even if I run into them in a work situation) because it helps them feel better to hear about me.  However, when I share, it is because I want to share, not because I feel like I should. 

Recovering From Injuries

For me, one little misstep can cause a big injury.  It may be as simple as stubbing my toe or jamming my finger – something that most people they wouldn’t even think twice about.  Three days ago, I was going down my one step outside my front door, lost my balance and rolled my ankle as I landed.  Luckily for me, my ankles aren’t one of my worst joints.  However, my knees and hips are my weakest joints, so this misstep caused a pretty big flare in both.  When I am recovering from injuries, I find that I can more easily get demoralized.  Here is some advice on getting through (and past) these tough times emotionally and physically.

Stay Positive

Injuries are part of life.  For those of us with arthritis, they are more a part of life.  It is tempting for me to replay the moment of the injury over and over again and criticize myself for my dumb decision.  However, there is really no reason to do this.  Instead, realize what you want to do next time.  For me, next time when I know I have a step in front of me I am going to take my time and get my balance first.  Or even go so far as to say that maybe a railing should be installed (although you can’t guarantee there will be a railing at every step in your life).  Once you have come up with a better plan for next time, MOVE ON.  Absolve yourself of guilt and realize that it was a learning experience.  If you have spent any time at all in your life without arthritis, you probably developed a lot of habits and it takes a while to realize which ones need to be adjusted. 

Remember that you will get better and that it is just temporary.  Generally injuries don’t affect your whole body, so feel free to enjoy the parts of your body that are working.  If your legs are hurting, play a game or read a fun book.  If your arms are hurting, go walk around the mall or do something special that requires your legs.  This helps to keep everything in perspective. 

Getting Better

Aside for my disclaimer that I am not a doctor, here is my advice on how I approach dealing with injuries.  This is a combination of great advice from my physical therapist and doctor, as well as my own empirical evidence.  I find that while things are really flared up, the name of the game is rest.  I have currently been averaging 2-3 miles of total walking per day, but since the injury, for 3-4 days I’ll drop to 0.5 miles per day.  Then as things go from the acute pain down to dull pain, I gradually increase my steps back up to 1 mile, 1.5 and then back to 2 (two days each). 

Along with rest, I actively do what I can do decrease the inflammation in my flared joints.  First, I ice a lot.  Second, I use an anti-inflammatory gel that I can apply directly to my joint.  If I wasn’t already taking a maximum dose of Celebrex, then I would add that back in as well.  I don’t take much for pain.  This is an example where pain is your friend (strange huh).  It is telling you exactly what is going on in your knee (i.e. what position it wants to be in, how much walking it should do, etc).  If you take too much pain medication, you will lose these signals and then the healing process will take so much longer.  Even at night, the pain is good because it helps make sure you don’t sleep in a dumb position that will exacerbate the flare.  If necessary, I take tramadol (mild pain pills), which take the edge off if I need to concentrate, but I still feel the pain so I can make good choices. 

Go Ahead, Break the Rules!

Arthritis doesn’t come with a rulebook, but it might as well.  Most people talk about rules like eating well, going to work on time and getting enough sleep, but none of the consequences for these can be as serious and immediate as doing something bad for your arthritis.  Since I have arthritis in most of my joints and I also have a lot of food allergies related to my arthritis, I have more rules than I can count. Sometimes it feels like I am a slave to my body.  When I add in rules about eating healthy and being a generally good employee/friend/wife/daughter it feels like I live a more rigid life then a criminal in prison. 

Sometimes, I get overwhelmed with responsibility and it can feel like what I want/need is irrelevant because there is only one right course of action.  So what do I do?  Break the rules!  Sure, there are a lot of rules I can’t break, but there are some I can break or bend without too much consequence. 

Stay up late and watch a show/visit/play a game.  Most times, when it is 10:30, I go to sleep no matter what.  However, some days my frustration with responsibility lines up with something I really want to do (like start a Glee episode even though it is 10:15).  So what do I do?  DO IT.  It may be TV, a game, or even a really good conversation in bed with my husband, but whatever it is, sometimes I need that more than I need to sleep at that moment.  Staying up 1 hour late isn’t going to kill me and then I rearrange the next day so I can nap or go to bed early to compensate. 

Eat that extra 100 calorie candy bar – Now, I am not suggesting going hog wild.  Weight and arthritis are enemies and maintaining at least a reasonable weight will help your joints stay healthy and recover from injuries.  However, will a 100 calorie Butterfinger kill you?  No!  Assess your mental state and if you find you really need a treat, then have one.  In general, breaking the rules is fine.  When eating the extra Butterfinger becomes the rule, then you have to recalibrate.  For advice on healthy eating for those of you who struggle with weight a lot or a little, check out this great blog I found:  http://liveitouteveryday.blogspot.com/.

Do a little extra something that will only tire you out a bit.  For me this is sometimes video games.  My hands get flared up easily, so I have to be careful, but if I play a little extra one day, it will be fine as long as I am okay with taking a lighter day the next day so that they rest.  As long as you know the consequences and are willing to do when you have to to keep everything healthy, bending an arthritis rule now and then is okay and helps to keep you feeling like you are in control rather than your arthritis.

There are other treats that help vent the pressure of living with arthritis.  You can take a day off work, not clean your dishes for a day, or bail on a commitment you have to go to but don’t want to.  For me, bending or breaking some rules makes it so much easier for me to cope with the millions of other decisions where I don’t have much flexibility.

Heading out of the House – Managing Uncertainty (Part 3 – Mental Tools)

1.       Talk to your family and friends about your condition.  This keeps them from being surprised if something needs to be modified (future posts will discuss friends and family more).  My family and friends know that hills are hard for me and that depending on how I am feeling, I may need to rest or walk shorter distances.  I also don’t do stairs so we know to look for other options or only go places where there are elevators.  This makes it so I don’t have to tell them “no” and feel like a drag.  I also find that a little up front education allows us to do stuff without ever having to discuss my arthritis.  I find a day when no one mentions that I am different to be a good day.  If we all just head to the elevator, then it doesn’t make me feel as abnormal. 

2.       Listen to your mental state.  Sometimes we aren’t in the mood to stick out and be weird.  And there are some groups of people where it is harder to bring up what you need.  Plan ahead and either only go for activities you know you can do, or mentally prepare yourself for a tougher time.  What you don’t want to do is go to something and then not have the emotional fortitude to ask for what you need.  This can be a disaster.  It is good to recognize that it isn’t easy standing out and it is okay to skip an event every once and a while if the benefit isn’t worth the cost.  Later, I’ll have more blog posts about staying connected with friends despite limitations.

3.       Don’t be too hard on yourself.  Approach it like a scientist.  Not every strategy will work.  It takes a while to learn your limits and figure out what is too much.  Having some missteps doesn’t mean it will go just as badly next time.  Have a plan, follow it and then evaluate it afterwards.  Decide what worked well and what you might do differently next time.  For me, even if I have a bad reaction, if I have in the back of my mind how I will do it differently next time, it makes it feel less permanent.  Even the missteps help to get to a better long term situation.  Honestly, one bad experience usually teaches us several things about our body and so instead of dwelling on the frustrating parts, celebrate what you have learned and put it to good use next time. 

Heading out of the House – Managing Uncertainty (Part 2 – Physical Tools)

1.       Plan ahead for routes that will work for you.  I always call ahead to find out about wheelchair rental (if I need it), stairs and elevators, or other info.  For a trip to DC, I researched where the handicap entrance was for each building.  This saved me having to walk all the way around to find it since I knew right where to go.  When we go to concerts, I buy handicap seats, even if I am feeling pretty good so that if I flare beforehand, I won’t be stuck standing.  For things you can’t know ahead, feel free to improvise based on tricks that have worked in the past.  If you come to a restaurant with stairs, see if the ally has an entrance with a ramp (most have a loading area), sometimes I ask permission, but other times I just sneak in without a scene.  It works great. 

2.       Have some physical tools in your arsenal.  Come prepared with tools like tape for your joints (if that helps), anti-inflammatory patches or creams, or a wheelchair or cane.  One problem is that I find it hard to figure out how much I have done on a day with sightseeing or shopping.  To solve this, I wear a pedometer (a higher end model) to track how far I have walked.  I wear it every day and know how much I can do given my current health situation.  Then when I go on an outing, I know my limit and can pace myself.  If I am getting too high in steps, I may rest for a bit while everyone else goes and does a bit more shopping, for example.

3.       Ask for help.  I know sometimes it is hard, and I struggled for a long time with this.  For example, I was with my brother and his wife and we were walking up a pretty steep hill.  My husband and I have figured out that if he puts a hand on my lower back and pushes as I walk, it makes it more like walking on flat ground as far as my knees and hips are concerned.  We had walked a long way and I was tired, but I still hesitated about whether to ask my brother to help.  I ended up asking and he felt so good about being able to help.  Also, the last thing you want is family feeling like they need to ask you all the time if you need something.  This makes them treat you like a sick person.  If you establish that you will ask when you need something, they will relax and treat you normally. 

4.       Have an escape strategy.  If I am with people I don’t know, I prefer to find a way for myself to get what I need independently instead of asking the group to alter their plans.  Sometimes I have to bring stuff up (like let’s take the elevator), but when it comes to asking them to go home early or not do something, I generally end up just going along with what they want and then will hurt later (violating my above goal).  Instead, I have learned to plan an escape, like driving separately, so that if they decide to stay longer than I want, I can leave when I am done.  If I am not sure whether an activity will work or not, I will drive separately to the event.  If it turns out it doesn’t work, I can leave and go do something fun on my own rather than watching other people enjoy themselves.   

Heading out of the House – Managing Uncertainty (Part 1)

Every time you leave the house, there is a large amount of uncertainty.  You don’t know what you will run into or how your body will react to what you do.  It is frustrating because one unexpected thing can cause a flare that lasts for months.  Most people can just do whatever they want whenever they want and not worry about any consequences.  Would this trip to visit my brother for the weekend flare me up for two months?  Will going to the supermarket today mean I am too tired to do anything tomorrow?

My goal when I go out is to have fun without having to sacrifice managing my arthritis.  I don’t want to be in a situation where I am forced to choose between having fun and taking care of myself.  In my experience, if I let myself get to the point of making that decision, then I am going to end up hurting afterwards physically or emotionally (or both!).  Most of my first few years, I felt like I was constantly putting myself in this position, but I eventually developed these strategies which kept me from getting stuck in the same rut, and also kept me from feeling anxious about what might happen.  Because of the length of the advice, I am splitting this into two posts, one about physical tools and one about mental tools.

Physical tools:

1.       Have an escape strategy

2.       Have some physical tools in your arsenal

3.       Plan ahead for routes that will work for you

4.       Ask for help

Mental tools:

1.       Talk to your family and friends about your condition

2.       Listen to your mental state

3.       Don’t be too hard on yourself