How To Combat The "Why Me's"

If you have a chronic illness or suffer from chronic pain, you have no doubt asked yourself “why me?” at least once…or more likely, a hundred times. I know I have. This question usually comes when you are not feeling well, when things aren’t going as you planned, or when you are in pain. It is something that is hard to move past. It can be frustrating and all-consuming at times. It can be depressing and can provoke anxiety. Here are a few tips that I hope will help.

1. Learn to accept that you may never get an answer. For the majority of us, there is no answer to “why me?”. Unfortunately sometimes things just happen. Acceptance doesn’t necessarily mean “it’s okay”. I’m not asking you to say that it is okay that you have an illness or pain. When I talk about acceptance, I mean being able to make necessary adjustments in your life, learning your new normal, and learning that despite your chronic illness or pain you can still be happy. Learning to accept that you may never get an answer to why this happened to you will be a process. It is not something that will happen overnight. You may want to resist it and that’s alright. It is not fair that this happened to you but with some hard work, dedication and a little reorganization of priorities, it is possible to be happy and to accept not having an answer to “why me?”

2. Find meaning. Ask yourself what good could come out of your situation. I guarantee that if you are open to that question, if you take the time to think about it, and if you are honest with yourself, you will likely come up with at least one positive thing that has come out of all the bad. For me, the meaning in my situation is that I am able to counsel others with chronic illness and chronic pain. It is what I love to do and I have been able to take my own experiences and knowledge and help others. For you it doesn’t have to be something as big as a career decision. It may be something as simple as the fact that you now have more compassion for others, you don’t judge people as quickly as you used to, or that your illness or pain has taught you to appreciate the small things in life.

3. Find a passion for something. Try to focus your attention on something other than “why me?”. Find a hobby or a passion that will make you happy and take your mind off of “why me?”. It is okay if the question comes into your mind once in a while. When it is constant or interrupts your quality of life, your focus, or your happiness, that is a problem. Finding something that brings you joy will help you to cope.

4. Find support. You are not alone. As I stated above, the majority of us with a chronic illness or chronic pain have asked ourselves “why me?”. If you find that you are having difficulty with this question, find support, either with friends, family, a support group, or a therapist. Talking about what you are thinking and feeling can help greatly.

My Invisible Illness is Real

Most people who have an invisible illness (a chronic medical condition that shows no outward signs) have experienced these words at one point and time: "But you don't look sick." These words can be extremely frustrating. I often ask my clients, "What is the most difficult thing for you about having (Crohn's Disease, ulcerative colitis, IBS…)?" I can't tell you how many times I have heard the answers "It's hard to talk to people about what I'm going through because they tell me I don't look sick", or "My family doesn't always believe how bad I feel because I don't look sick", or "I've been told it's all in my head". I could go on. This is one of the difficulties those of us with chronic illnesses need to learn to overcome. The idea that people don't believe us because they cannot see our illness like they can see someone in a wheelchair or a like they can hear a chronic cough can feel isolating and depressing. Sometimes it can make us feel like maybe it really is in our heads. Maybe we aren't really as sick as we think. Instead of giving in to this, we need to fight back! Understand that these people aren't saying these things to be insensitive. They just don't get it. So educate them! Explaining to them what you are going through and why you don't look sick will not only educate them on something they are unfamiliar with, it can be empowering for you too. Also, trust yourself. You know how you feel. You know your illness. You know that it is not in your head. It is real.

The Importance of Choosing the Right Doctor

I have been thinking about this topic for quite some time. Not only have I recently had clients question their choice in doctors, I have been thinking about how lucky I am to have the team of doctors I do. I quite literally owe my life to my colorectal surgeon and his team as well as my gastroenterologist. I have complete trust in them and know they have my best interest at heart. That is very comforting.

When you are living with a chronic illness or chronic pain, choosing the right doctor can make all the difference in your treatment. So, with all of the doctors out there, how can you be sure you have chosen the right one for you? Here are some tips:

Do your homework: If you are searching for a doctor, make sure you do your research! Check out healthgrades.com, vitals.com, and other sites where patients can post reviews. Also, don't be afraid to make an appointment to interview potential new doctors. Ask the doctor any and all questions you need answers to in order to make a decision about who would be the best fit for you. If they value you as a potential new patient, they will take the five or ten minutes necessary to answer your questions.

Choose a doctor who specializes in your condition: If you have gastrointestinal issues, choose a gastroenterologist. If you have chronic pain, choose a doctor who specializes in pain management. You get the idea. I cannot express how important it is to have a doctor who specializes in the specific illness you are struggling with. General practitioners can be great for common colds, flu's and that sort of thing, but when you are dealing with something specific, such as Crohn's Disease, arthritis, chronic pain, etc. you need a doctor who knows everything possible about your condition.

Trust your instincts: If you have been seeing a doctor you are not happy or comfortable with, find another doctor! I know this sounds like common sense but I can't tell you how many clients I have seen who have stayed with a doctor they are unhappy with. To some degree I understand. Doctors are seen as authority figures so sometimes we question our own instincts when we feel uncomfortable with a doctor. We think it must be something within ourselves, not something with the doctor. Please know that if you feel that something isn't right or you are not getting the treatment you deserve or need, you are probably correct. Trust your instincts. Your health and happiness are on the line.

If you aren't sure, get a second opinion: If you have received a diagnosis you are unsure of or your doctor is recommending a procedure or surgery you are not sure you need, get a second opinion. The worst that is going to happen is that the second doctor will agree with your doctor. At least you will then have the peace of mind you need to move forward.

Ask your peers: If you are looking for a doctor, don't hesitate to ask people you know for a recommendation. You can also research Facebook groups or other online forums dedicated to people with your illness and ask individuals there for recommendations. Hearing the good, the bad, and the ugly from actual patients can be the best way to find a new doctor.

Raising Awareness About Lupus

Recently I was contacted by a representative of Healthline, a fantastic medical website which offers information and resources on just about any illness or medical issue you can think of. I highly recommend you check it out. The reason I was contacted was because their goal this year is to raise awareness about Lupus, a chronic autoimmune disease that can affect any part of a person's body. The representative who contacted me was hoping I would help them raise awareness. Of course, I jumped at the chance. First of all, it is my goal to raise as much awareness about chronic illness and chronic pain as possible. Second of all, I have been dealing with chronic illnesses since I was 18 months old and I know how empowering education and resources can be.

When I was 18 months old, I was diagnosed with Juvenile Rheumatoid Arthritis. It went into remission when I was six years old and came back when I was fifteen. At that time it was difficult to control my symptoms, so my rheumatologist wanted to test me for Lupus. I remember being so afraid of that word and what it meant. I didn't have a great understanding of what Lupus was. All I knew was what I had seen from a woman on T.V. who had Lupus. She said that she was extremely tired all of the time and that she was in a lot of pain. At the time, there was not a lot of information available about Lupus. I wish I had a resource like Healthline. It would have made that possible diagnosis a little less scary. If you or someone you know has Lupus, or you think you may have Lupus, please check out this link:

http://www.healthline.com/health/lupus/effects-on-body

It is a virtual guide of the symptoms of Lupus and how it affects the body. It's a great resource.

The Brain-Gut Axis...Part 2

I found this page today while doing a little browsing “Five Hot Topics in Inflammatory Bowel Disease Research”. http://theibdimmunologist.com/5-hot-topics-in-inflammatory-bowel-disease-research. If you take a look at number 4, it says “The Brain-Gut Axis”. This is the same thing as the Mind-Gut Connection I talked about in an earlier post. While I was very happy to see that this is one of the “hot topics” in IBD research, I was a bit surprised. I can’t tell you how many GI doctors, nurses, other medical professionals I have contacted to tell them about the importance of looking at the psychological effects of IBD as well as the importance of preparing patients psychologically for surgery. I’ve told them about the services I offer, in terms of counseling, speaking and support groups. While some of these doctors understand the importance of the psychological component to these illnesses, it seems that most of them either don’t understand, don’t believe in it, or don’t want to take the time out of their busy schedules to learn about how psychological help may benefit their clients.

I believe there is truth to this “Brain-Gut Axis” and I think it needs to be taken more seriously in the medical community and that it needs to be mentioned to patients. Referrals need to be offered if needed. After all, how would patients, especially new patients, have any idea how much their psychological state could affect their disease course or management. I guess my question is, how can we make this a regular part of IBD treatment? Any ideas would be welcomed.

Get Motivated! 10 Tips That Will Help You Reach Your Goals

At times, having a chronic illness can make it hard to stay motivated to reach goals. Some days you may not feel well enough. Other days you may think “what’s the point if I’m always going to be sick?”. Below are 10 tips to help you stay motivated to reach your goals.

1. Start with one goal: Often times it’s hard to get motivated because there’s just too much going on. When there are a million things going on in your life and five different things you want to achieve, it’s very hard to remain focused. Write down your goals and then prioritize. Choose one goal to work on and focus only on that goal. You will achieve your goal quicker and it will be easier to stay focused and motivated if you work on one goal at a time.

2. Start small: Once you have chosen the one goal you are going to focus on, write down baby steps you can take to get there…and I’m mean BABY steps. Start very small. It will be easier to continue to be motivated if you start small and are able to see your successes.

3. Recognize small successes: Each time you complete a small step toward your larger goal, recognize it and be proud of yourself! Recognizing that you are completing the steps necessary can be very motivating because you will see that you are getting there!

4. Set a timeframe for completing your goal: Think about what an appropriate, realistic timeframe would be for completing your goal and mark it on a calendar in red. Look at that day on your calendar regularly as a reminder and as a motivator.

5. Find inspiration: Whether it is from someone you know who is already doing what you are working toward, reading information online, reading blogs, books or magazines, finding inspiration to reach your goal can do a lot to give you a boost of motivation.

6. Remind yourself of your goal: Make a poster with a short sentence describing your goal or simply write it on a piece of paper in big letters and tape it up where you will see it every day; on your mirror, on your refrigerator, on your desk at work…you get the idea. It’s hard to ignore it when it’s in your face every day.

7. Tell people about your goal: Whether it’s just one person or a whole bunch of people, telling people about your goal will make you feel accountable, which in turn will help to motivate you to succeed.

8. Get support: If you have a friend or family member working toward the same goal as you, talk to them about doing it together. Having a buddy makes accomplishing a goal easier. You can rely on each other during the times you are each feeling less motivated and you can celebrate together when you have reached small milestones. If you don’t have a personal friend or family member working toward the same goal, look online for any support groups that may be out there.

9. Create a routine: Make accomplishing your goal a part of your daily or weekly routine. For example, if getting in shape is the goal you are struggling with, dedicate yourself to exercising on specific days of the week at the same time on each of those days. While it may be a struggle at first, once you get into a routine it will be easier to stay motivated.

10. Replace negative thinking with positive thinking: Instead of thinking “I will never be able to do this”, think “I can do this and I will do it!” Make an effort to recognize your negative thinking patterns and make a real effort to turn those around. Negative self-talk will make it ten times more difficult to stay motivated and reach your goals.

The Five Stages of Grief for Chronic Illness or Chronic Pain

I’m sure some of you have heard of the five stages of grief developed by Elizabeth Kübler-Ross. Kübler-Ross developed these stages to explain the process individuals go through who are near death. But did you know that these five stages can be used to explain the process people go through when diagnosed with a chronic illness or chronic pain? Below, I will explain how these stages relate to those of us with chronic illness or chronic pain. Along with the “depression” stage, I have added anxiety because I think this is common in most of us who experience a chronic illness or chronic pain. As you read these, think about which stage you may currently be in. Remember, these stages are not linear. You can jump back and forth between stages depending on where you are at in your diagnosis.

Denial

In this stage, the world becomes meaningless and overwhelming. Life makes no sense. We are in a state of shock and denial. We wonder how our life is going to change and how we are going to live with those changes. Denial and shock help us to cope and make survival possible.

This stage can be dangerous for people with chronic illness/pain because at this stage if they are in denial about their illness or pain, they may not take the necessary steps to get themselves the treatment they need.

Example: “It’s not a big deal, it will go away”

Anger

Anger is a necessary stage of the healing process. Be willing to feel your anger, even though it may seem endless. The more you truly feel it, the more it will begin to dissipate and the more you will heal. There are many other emotions under the anger and you will get to them in time, but anger is the emotion we are most used to managing. Your anger has no limits and it may extend not only to your friends, doctors, your family, yourself and your loved ones.

Example: “This isn’t fair! I didn’t do anything to deserve this!”

Bargaining

This is the stage where we want more than anything for life to be what it once was. We become entrenched in “if only” or “what if” statements. Guilt is often bargaining’s companion. The “if only’s” cause us to find fault in ourselves and what we “think” we could have done differently. We may even bargain with the pain or illness because we would do anything not to feel it anymore.

Example: “Please just don’t let this ruin my life”.

Depression (and/or Anxiety)

After bargaining, our attention moves squarely into the present. Empty feelings present themselves, and grief enters our lives on a deeper level, deeper than we ever imagined. This depressive stage feels as though it will last forever. It is important to understand that this depression is not a sign of mental illness. It is the appropriate response to a loss. We withdraw from life, left in a fog of intense sadness, wondering, perhaps, if there is any point in going on. Depression after a loss is too often seen as unnatural: a state to be fixed, something to snap out of. Being diagnosed with a chronic illness or experiencing chronic pain is a loss – a loss of the life you once had. Depression is one of the many necessary steps along the way toward healing.

Having a chronic illness or chronic pain also may bring up feelings of anxiety; anxiety about what the future holds, anxiety about not being able to live up to expectations now that this illness or pain is present, anxiety about social situations, anxiety about medical bills, etc.

Example: “I’m going to be in pain forever so why even bother”.

Acceptance

Acceptance is often confused with the notion of being “all right” or “OK” with what has happened. This is not the case. Many people don’t ever feel OK or all right about having to live with pain or an illness for the rest of their lives. This stage is about accepting the reality of your situation and recognizing that this new reality is the permanent reality. We will never like this reality or make it OK, but eventually we accept it. We learn to live life with it. It is the new norm with which we must learn to live. We must make adaptations and alterations to our lives. We must find new things that bring us joy.

Example: “I’m not going to let this define me. I will learn to deal with this the best I can”.

10 Ways to Manage Stress with a Chronic Illness

1. Relaxation techniques – Relaxation techniques are very helpful for relaxing your mind and body. The simplest relaxation technique is deep breathing. To do this, sit in a chair or on a couch with your feet planted on the floor. Close your eyes if you would like. Begin by taking a deep breath to the count of 3 or 4, inhaling through your nose. Pause for a second and then exhale through your mouth to the count of four. While you are breathing in and out, focus on your breath and on counting. Repeat this until you feel relaxed.

2. Evaluate your priorities – We tend to have a lot going on in our lives with work, school, relationships, kids, etc. A lot of the time, our health tends to take a backseat to these other priorities. When you have a chronic illness, it is really important to make your health a top priority. Sometimes it takes evaluating the priorities in your life and figuring out how you can rearrange things, where you can ask for help, and what you can hold off on in order to make sure you are taking care of your health.

3. Participate in at least two enjoyable activities per week – It’s really easy to start feeling depressed and anxious when you have a chronic illness. To help avoid this it is important to do things you enjoy. Make it a goal to do two things you enjoy per week. That can be anything, ranging from reading a good book to taking a walk on the beach.

4. Make lists – Make a list of the things you absolutely have to do on a certain day and a list of the things you would like to do but don’t necessarily have to do. Focus on doing the things you have to do. If there is time and you have the energy, then you can start on the list of things you would like to do.

5. Enjoy the days when you feel good – Whether there are many of these days or they are far and few between, enjoy the days when you feel good and be grateful for them. It’s really easy to focus on the negative things about having a chronic illness. Instead of doing that, focus on what you can do when you feel good.

6. Be proactive with your medical treatment – Make sure you stay on top of doctor appointments and medications. That way you won’t fall behind, which will only make you more stressed out. Plan appointments far ahead of time so that you make sure to get a day and time that is convenient for you. Order prescriptions early so you aren’t rushing to the pharmacy the day you run out of medication. Make sure to report new symptoms to your doctor as soon as possible so that something can be done about it. You see where I am going with this…

7. Find social support – Whether it be with family or friends, or a support group for people with chronic illness, having support is extremely important for managing stress.

8. Exercise – Do what you can when it comes to exercise. Swimming, yoga, or even taking a short walk can do a lot for stress management. If you are having a difficult time thinking of exercises you can do, talk to your doctor and brainstorm together.

9. Make time for yourself – With everything going on in our daily lives, it is important to schedule in some “me” time. Even if it’s only a short amount of time per day.

10. Try not to put so much focus on the things that are out of your control – We only have control over so much. We do not have control over the fact that we have a chronic illness. But we do have control over what we are going to do about it. We can choose to let it affect us negatively every day, or we can choose to learn to make alterations and accept it. We can choose whether or not we are going to be on top of our medical treatment so we can get our illness under control as much as possible. We can choose to focus on the negative things about our illness, or we can choose to try and find a positive. We can let our illness become who we are or we can choose to let it be something we have.

Why Don't Medical Professionals Know What a J-Pouch Is?

It’s amazing to me how many medical professionals have absolutely no clue what a J-pouch is. I can’t tell you how many times I’ve had a doctor or nurse ask me to see my pouch. Really?!? I don’t know why it surprises me anymore but it still does. I don’t know what it’s going to take to educate these people. Shouldn’t they know?

A few days ago I had a pouch endoscopy because of the prolapse of my intestine into my pouch that happened a couple weeks ago. Because my surgeon was out of town while it happened (story of my life) he was unable to take a look while I was at the hospital so he wanted to take a peek to see if he could see anything that may have caused the prolapse. I went to the GI LAB at the hospital to have this procedure done. Did you happen to notice that I capitalized GI LAB? While I was there, I once again had a nurse ask if she could see my pouch…at a GI lab!! This amazed me. I again had to explain that it is an internal pouch and you can’t see it. Luckily, shortly after she asked me that question she gave me a hefty dose of Versed which saved her from a slap in the face, just for asking that question. Just kidding, but really, it kind of annoyed me. Anyway, the good news is that my surgeon said my pouch looked normal and that he couldn’t see anything that would have caused the prolapse. I guess now it’s just a wait and see game. If it happens again, we’ll deal with it then.

All of these experiences with these doctors and nurses make me wonder how or if we can educate the medical world about J-pouches so we aren’t constantly being asked about it. Any ideas?

Accepting Your Chronic Illness

ac•cep•tance:

1. The act of enduring without protest or reaction.
2. The act of recognizing as true.

One of the hardest things to do when you have a chronic illness is to accept your situation. It is something that usually takes time and a lot of hard work to achieve. Why is it so hard to accept having a chronic illness? There are many reasons. Having a chronic illness may mean a complete change in lifestyle. It may mean taking several medications daily. It may mean the inability to do things you once enjoyed. Having a chronic illness may mean not knowing when you are going to feel good and when you are going to feel bad. There are a lot of unanswered questions that come along with having a chronic illness: “Why me?”, “What did I do to deserve this?”, “What is in store for my future?”.

When I talk about acceptance with my clients, I don’t mean that it is okay that you have a chronic illness. What I mean by “acceptance” is recognizing that your situation is long-lasting and making alterations in your life that will enable you to live the happiest, fullest life possible. You can’t avoid your illness but you can learn to live with it without struggling. It also means the ability not to let your illness define who you are. Your illness is something you have, it is not who you are.

So, how do you begin the process of accepting your chronic illness? Step one is acknowledging the fact that you may never get the answers to all of your questions. You may never find out why this happened to you or if there was something you could have done to prevent it. Sometimes it just is. Asking why can leave you feeling helpless. Step two is making alterations in your life. For example, if exercise is something you really enjoyed before you got diagnosed and you are now unable to exercise to the extent you could before, think of ways in which you are still able to exercise. Maybe yoga would be a better option, or if running is too strenuous now, take long walks instead. The third step of moving toward acceptance is to find meaning in your situation. You may never find the answer to why this happened to you. Instead of focusing on that aspect of your illness or on the negative parts of your illness, find a sense of meaning in your situation. Maybe that means leading a support group for others who have the same diagnosis as you do, or volunteering at a hospital, or maybe you have decided that you want to become a doctor because of your experiences. Whatever that meaning is for you, it is important to find something positive to focus on. Lastly, make it a goal to participate in at least one enjoyable activity per week. Having a chronic illness can be life changing. In order to avoid depression and in order to learn to live with your illness, it is important to continue to do activities you enjoy. Maintaining a sense of normalcy in as many areas as you can while making alterations in those areas that are necessary will help you to feel more in control of your life.

Remember, having a chronic illness does not have to be solely a negative experience. Along with the negative feelings and experiences derived from triumphant feelings and strength that come with overcoming obstacles. With each success comes the confidence that you're able to live a full, rewarding life and maybe even a more meaningful life than if you hadn't been diagnosed with your illness.